Braden Mark Wilson's Blog

2011 Recap

2012-01-03T08:58:00.004-06:00

Sorry we haven't posted in awhile, but Braden having his own Facebook page makes it very quick and easy to share information. You can see his page at: http://www.facebook.com/pages/Beelieve-in-Braden/184511298252632s

This year was good... we only had as few hospital stays. One for gas in his belly,One for colon back-up and belly distention, and one for failure to evacuate his bladder - creating belly distention. We even had a surgery and a bronchoscopy... and it was done OUTPATIENT!! PRAISE GOD FOR HE IS SO GOOD TO US!!

This year did bring on new problems for us to monitor. Braden's urinary output has slowed to the point that he needs intermittent catheterization. So we monitor his daily output, and cath him when he isn't going like he needs to. When he's not going like he needs to, he ends up with infections, and we have battled a few of those this year.

You know for years we've always battled the monitoring of his temperature, since he throws us hot flashes. Over the past two years, we've started battling his temperature drops. So now we monitor his temperature frequently throughout the day, and have to add rice or corn bags or heating pads to bring his temperature up. Even something as simple as taking him to daycare can drop his temperature too low.

This year we have three caregivers in place - LaTacia, the daycare owner who has kept Braden since he was about 8 months old. She keeps him at daycare two days a week, to minimize moving Braden, and watches him on Saturdays at the house through our PCA agency for extra money. Erica, her sister has been with us for a year now as a PCA (Personal Care Attendant). She splits most of the time with Ebony, Braden's home nurse. Braden seems very happy and stable with this set-up. Everyone gets along great, and Braden's caregivers are so sweet - they miss him when they don't work or when we take him on a holiday or medical trip. Braden is surrounded by wonderful caregivers.

Braden's mediport surgery went great, and the new one is now working so much easier than the last one. In fact, the plan is to get Brad and I trained on how to do the port flush as well. Our anesthesia & recovery went so well, we plan to ensure we get the same anesthetist every time!

Kodi's father passed away this fall, and it was a distraction to our normal worries about how many more Christmas celebrations we will have with Braden. It wasn't until we were with family over the holidays and their inquiries about this April's birthday plans - that it really struck us that Braden will turn SIX this year. SIX people!! An amazing feat for a child who was not supposed to make THREE.

This year's goals include: 1. working on a new fundraiser cookbook for Braden (with fun new sections for cake balls, popcorn and drinks! - so send your great recipes to me), 2. to reprioritize activities to include more time devoted to doing the Lord's work (as we are His hands and feet on earth), and 3. reducing distractions and drama that take us away from peace, family time or our focus on time with Braden.

Brad's job is going really well and a student fee increase passed that will keep him busy with new construction projects for the next few years. After overseeing these projects, other doors will open for him. Kodi's job continues to provide challenges, but we are resting in patience in the Lord for the right doors to open for her, but for now, it looks like those opportunities are likely more than a year away. For now, they both continues to prepare their students for the next step in their careers.

We joined Healing Place Church this year, and had Braden and our family dedicated at a service the second week of January. We are grateful for another year with our precious angel. We are so grateful for your support and your prayers. We continue to take it day by day and remain focused on the little things in life that really matter. Braden is doing some new things this year - he stretches his legs out so straight and hard that they actually shake - hence a new nickname "Thumper", he will occasionally have fake conversations and grunt back and forth like a conversation with him (so cute)(usually putting him in the carseat & he fusses about it), he will "whine" when he wants mommy to rescue him from therapy or bathing, and today, we learned that Braden likes red balloons - he actually tracked it & stared at it - a gift from the dentist (we really like him). So it's the small things that bring us great joy.

We hope 2012 bring you many blessings and lots of JOY as well.
The Wilson family

Stones...

2011-06-08T21:25:00.003-05:00

Our poor little guy has been battling with these stones for several months now. We've treated the pain and stopped using a drug because of its ability to cause stones. We had a sonogram this morning and a consult with his nephrologist. We decided that we would add 200cc of extra fluid to his diet and try to flush them. Before we even gave him the first his set of fluids he passed what appears to be (3) stones in one diaper. We still have to send them to his doc to confirm, but his demeanor has changed for the better. Hopefully this will be the end of this chapter.

Long time, no talk...

2011-05-28T19:26:00.001-05:00

Some of you might think that we've dropped off the face the of the earth. Well, we haven't, it's just been a tremendously busy spring.

In March Braden was admitted to the PICU, admit #37, with what we thought at the time was a possible blood infection. He had some labs drawn on a Thursday, and the next morning we received a call early from his pediatrician. She advised us that we need to get to the PICU right away. His labs came back with a possible staph infection in his blood.

We were directly admitted to the PICU at OLOL and within minutes they had started a broad base antibiotic. They took a second set of labs to compare. Needless to say, we were quite worried because this has never been an issue for us. Four hours went by, nothing was growing in his labs. Eight, twelve, sixteen hours later still nothing coming back. After the first 24 hours it was concluded that the original set must have gotten contaminated. Our medical team felt awful, but as I assured them, I would rather go through this 100 times and it be wrong, then the one time we don't and it's actually a problem.

In April, Braden was admitted again, #38, because his belly had become distended. As you can imagine he was in a lot of pain and we needed to get the trapped air out. Once he was in his room, they hooked him up to a pump to syphon out the air. The docs determined that it may have been caused by a mixture of some of his meds. Because Braden doesn't move that often, he has a tendency to have air not pass through his system regularly. After going through his chart and resuming his feeds, he was able to tolerate it and we were discharged after a few days.

Also in April, we invested in getting Braden an iPad 2. Naturally he does not receive any direct benefit, but we got it to transcribe his chart onto. His charts are so large, we thought it would be wise to download the material and save it to the iPad. Which ever one of us goes to his appointments with him takes it and records his visits. It has come in handy in recent visits because his meds are loaded into the program as well (My Medical for iPad).

During the later part of May we made a visit to our docs in Houston. This past spring we have reconnected with many of our docs at Texas Children's and UT-Med. We now are on a 3 month rotation with them and so we"ll be make more frequent visits. We are seeing a Mito-doc, Immunologist, geneticist, and his epileptologist. We've had some good conversations and hope to continue to pursue answers. Certainly Braden's diagnosis won't change, but we hope to find answers to what it means if we have additional children.

That is just a quick snap shot of what our spring has been like.

You can follow Braden on:

Facebook: "Bee-lieve in Braden" page

Twitter: @babybdub

Making Transitions

2011-01-29T15:22:00.006-06:00

So after our battle last year to get an emergency slot on the NOW Waiver, most of you know, we are now approved after getting our day in front of a judge, and just this past October got approved and FINALLY got Medicaid!!!

In November, we started training some PCA's (Personal Care Attendants) for Braden. They were approved to watch him during evening and weekend hours. God has blessed us already with Latacia's family... she is working through a divorce and was the first to ask if she could have hours... OF COURSE!! Then her sister wanted to learn how to take care of Braden too... so she has been training with us since November.

It's not this instantaneous weight off our shoulders, because with Erica (LaTacia's sister), she's learning how to read Braden's signals and know what to do when he beeps or seizes, etc. She has caught on pretty well, but she's not confident enough with her training to yet leave her for more than a few hours. But it has allowed me to cook a meal without stopping 5 times to answer Braden's beeps, get some side work done, and just have some "down time", even if it's just grabbing a shower without worrying if Braden will go off while I am in there!! ;-)

You might be asking - well, where is Brad during all this? He works 5 or 6 nights a week doing basketball games. He referees for middle school and high school, and does the score table for both LSU men and women's basketball. Yes, it keeps him very busy, and makes me more of a basketball widow than most coaches wives:(

So we are working on getting Erica comfortable, and can run to the store, and last night was able to enjoy a dinner out with Brad's aunt Jeannie & uncle Jerry who stopped through on their way home to Pensacola from Baldwin, LA where they were doing mission work. While it was sad to leave Braden home, it was nice to have adult conversation and some relaxation without having to worry about addressing any Braden issues:)

At a glance, you might think, "oh, it's great that Braden finally has someone to help watch him so Kodi & Brad can do... xyz". That is true - but it takes a LOT of training and time to get a PCA up to speed. It's not like they just come in, and we can walk away. So every single person we bring in is an investment of time and emotion. But we are happy that we are moving down that path where Erica will get comfortable, and we can leave her for longer periods of time.

Up next - we will be interviewing and trying out home nurses!! This too will not be a quick or easy fix, and will require a large investment of time. But it gets us closer to giving the best care for Braden.

I'd like to tell you he's just fine and stronger than ever, but the reality is that we are seeing signs of his decline. We no longer have weeks or months without any "incident" of sorts. Every day we are monitoring a new situation, and it can be stressful, to say the least. We literally have a new focus every single day of the medical variety to monitor and address with Braden. It's stressful, and that's when we can lose focus of taking care of ourselves, so it will take extra effort to ensure we take care of us to be the best parents and caregivers for Braden we can be.

Today, we dropped Brad's vehicle at the dealership to get a back seat fixed, and then went to the grocery store together. As we were walking out, I realized that it has been YEARS, since Brad & I were able to accomplish the simple task of going to the grocery store together. Usually, one of us is home with Braden, so we aren't dragging him around with all his equipment just to get some groceries. Today, I'm making a batch of Valentine's cake balls/truffles... Tomorrow, I plan to get in some exercise... a little "me time" every day. GOD knows I am a "work in progress":)

Medical Fundraiser - Cookbooks!

2010-10-30T19:06:00.004-05:00

THEY ARE HERE!!!!!

After two years of forcing myself to measure and actually write down the stuff I make, and gathering some of our most favorite recipes, Braden's fundraiser cookbook is finally finished!! You may order them right now on E-BAY by clicking here:
http://cgi.ebay.com/Say-Grace-Braden-Wilsons-cookbook_W0QQitemZ250718060432QQcategoryZ11104QQcmdZViewItemQQ_trksidZp5197.m7QQ_trkparmsZalgo%3DLVI%26itu%3DUCI%26otn%3D1%26po%3DLVI%26ps%3D63%26clkid%3D4610210827762830881

If you are headed to Ashland, KS the day after Thanksgiving, you may head to the annual window unveiling and pick one up from my awesome sister-in-law Jenny and her sisters, my mom and sister who will have a booth with cookbooks available:-)Or you can put in an order with Jenny too - she's taking orders.

Or if you work at National Beef in Dodge City - see my sister Shala and you can order one from her.

If you know my friend Victoria Fisher, she's taking orders in Chicago!

Of course - the obvious for you folks in Baton Rouge who see me or work with me, of course I am taking orders too so you can save on shipping.

We appreciate you passing on this information to anyone you know who might like to get a great cookbook for the holidays! It's a great cookbook for busy families, as most recipes can be done in less than 30 minutes. Great short-cuts for family favorites, good tips for first-time cooks, and a few impressive dishes for company... along with yummy desserts to share!

Thanks for your support, we hope to make enough off this cookbook to get Braden a new carseat for the Durango (about $800) and a stroller for daddy's vehicle sturdy enough to support Braden and his machines so both parents will be able to transport Braden without getting stuck in an emergency without something to move him in.

Bless you and yours and you prepare for this holiday season!!
Kodi, Brad & Braden

10-10-10 Reflections

2010-10-10T21:03:00.009-05:00

As this special date in history occurs, and as Braden's half-birthday approaches, I've been reflecting quite a bit on our life. I certainly understand what it means to live the expression "No rest for the weary". You know how I was telling you taking care of a medically involved child like Braden is like having a newborn - all the time?

If you've ever had a big event you've been planning kind of take over your life, and keep your adrenaline going weeks on end, that's kind of what it can be like. When the adrenaline wears off, and you finally relax, you get sick - really sick. This is what having Braden is like, and when we finally relax, rest and let the adrenaline wear off, we usually get sick, because it just takes over your body because the adrenaline is gone. So any little sinus infection or other, once it grabs ahold of your tired body, it can completely wipe you out.

Every single day, we have a new set of worries, a new rush of adrenaline, a new evening of light or little sleep, a new period of vigilance over whatever ailment Braden faces that day. EVERY DAY. It's a life that constantly keeps us on our toes. Here's the list of things we monitor on high-alert every single day:
1. Seizures - are they under control? Can we stop them if he goes into status?
2. Urine Output - has he gone in 6 hours, have we tried all our "tricks" to get him to go?, will we have to take him to the ER or clinic to have him cathed? Is there a blockage in his tract, or just sediment? Do we just try pushing more fluids?
3. Comfort Level - is he comfortable? Is he having kidney pain today - is that why he's so whiney? Or is he whiney for other reasons? Will I be up with him again tonight to manage his pain and comfort him?
4. BM output - when was the last time he went, does he need mirilax or a suppository or more water in his diet today to help?
5. Body Temp - is he too warm today, having hot flashes or is he too cold now, is his heart rate dropping because he's too cool? Do we add blankets, take them away, try fans or try snuggling for body heat?
6. Drool/Snot Patrol - yeah, really. Is it clear, or has it turned colors? Do we need to give extra breathing treatments today? Call the doctor to get a sample taken because it's turning colors or getting thick?
7. Port access - will the nurse get it this time? Will we have to stick him a few times to try access? Will we have to take him to the hospital because we can't get access? Will this mean another surgery to replace the port if we can't?

These are the set of day in and day out worries that somedays feel like they will age me twice as fast. But the rewards of caring for a special child like Braden are hopefully being stored up in heaven for us. It's hard to let other worries in life seem more important most days, it's usually other people without this kind of perspective that try to drag you down into things that don't really matter. I'm thankful for the people in our life who, because of Braden, know what things in life really are important, and are forgiving on the days we may fall short when the issues of the day seem overwhelming.

Thanks for your continued prayers for all of us. Braden, Brad & Kodi

Mito Awareness Week

2010-09-29T20:36:00.004-05:00

Last week I kept up my Facebook posting different snippets about Mitochondrial Disorders. Nothing I could have put together could have been more beautiful than the awesome and touching video put together by Mito Mom Mandy Poche, who organized our first Baton Rouge area "Mito Meet-Up". 8 families invited, 1 ended up in the hospital, 1 had a stomach virus, and we ended up with 4 families in attendance.

The Bacot family came - our friends who also have a diagnosis of Leigh's Disease. Juliana made eight years old - proving that patients with this diagnosis can outlive their original prognosis by years by the grace of God.

The Poche family's youngest daughter was diagnosed very young with a mitochondrial disorder, but they suspect the middle child might also be affected, as her development was very delayed and shows some additional possible signs of a mito disorder.

Lastly, we met a sweet girl Morgan, who is in school at LSU and was diagnosed just recently with a mito disorder. We remain hopeful she will have many long years to overcome her disease. I think it was quite a relief for the family to know they are not alone, and that there is hope to fight this disease, despite the prognosis we are all given.

Mandy put together a touching awareness video, featuring each of our families. I'm so grateful she did this, and we look forward to another one next year!! You can see it here: http://www.youtube.com/watch?v=ry_eUeivyPE

Thanks for checking in on us... MEDICAID has paid it's first bills for Braden (select medicine co-pays and therapy co-pays), so we are super-excited about getting a little financial relief!! It's not totally covered, but every little bit helps! Currently, we are interviewing PCA workers to watch Braden in the evenings so we can take care of bills and make dinner, clean house, etc. - it's very exciting to know that soon we will get some help to maybe go on a date night on a regular basis!!

Thanks for checking in on us,
Braden, Kodi & Brad

Looking for New Diggs

2010-09-04T16:32:00.006-05:00

So we took a time-out from the blogging for awhile, seems we got a little busy around here! A few groups of friends of ours have recently bought homes, and shared with us the awesome rates they were able to secure. As we look to expand our family in the coming years, we expected to be looking to make a move in the next few years. Not to mention, we are FINALLY going to get set up with some home nursing through Medicaid on the NOW waiver, we really need to live closer to LSU. If something happens to Braden, we don't want to be 30 - 40 minutes away (or over an hour depending on the time of day), we need to be much closer so that we are comfortable setting up the home nursing. So, it's prompted us to put our house on the market, and start looking for a home to grow into, that's much closer to LSU.

So we've been busy de-cluttering and spring cleaning pretty deep... while we park a mobile "mini" in the driveway. The quotes because it sits higher than our roof line. Last time we got a mini, we still had to get an additional storage unit on top of it, and this time we were determined to move just once. It's massive, but for now, allowed us to de-clutter and move things into the unit while still keeping an aisle down the middle. It will have to be re-packed when we are really ready to make the move, because they get that sucker at a 45 degree angle on and off the truck! So we will have to be sure it's all secure and things don't get crushed or broken in the move. It definitely looks more industrial than home storage, but it should do the trick.

Braden has been doing great since right before our trip. He's very particular these days about not liking his shirt being taken on or off over his head, but for the most part he's been a very sweet kiddo! He definitely likes to snuggle in his chair that the International Wish Foundation got him - it's been such a blessing to be able to snuggle with him as he gets so BIG!

He grows bigger all the time, it seems, and he's wearing a size 6. A 6 people - can you believe it? He is fine in short season, but I'm sure as we move into pants season, we will see just how long those pants will be on him... he's very long in the torso, and those pants will likely be too long for his little legs:-) Built just like his daddy - wide shoulders, long torso.

Today daddy is traveling, playing chaperone to the Student Government annual "bus trip" to an away game. Today LSU will play North Carolina in Atlanta at the Georgia Dome for our season opener. Braden and I will cuddle up here in Baton Rouge at home to watch for daddy on TV. Geaux Tigers!

Mommy is busy proof-reading the fundraiser cookbook - so we hope to have it available for purchase soon! It's a very busy school year with daddy moving up into the interim associate director's position, and mommy launching new products for the sales team and a new era in media sales.

We ask you to keep praying for Braden's Aunt Shala, Kodi's sister. She has been diagnosed with cancer #4, and is battling a tumor on her chest wall. Chemo has begun, a radiation implant placed (because former rounds of radiation lead to her losing a kidney last year), and an appointment with a specialist in Denver is booked. We know that she too will win this battle, as Braden continues to fight his battles too... he has to have someone to look up to! Thank you for your prayers and checking in on us, we hope to do a better job keeping the blog updated, we are just so grateful to have this period of having a healthy Braden!! Thank you, Jesus!

Love from the south,
Kodi, Brad & Braden

Anniversary thoughts & more

2010-07-01T20:13:00.006-05:00

First family photo
Today is my 10-year anniversary with Brad. As I reflect today on my marriage and my child, my mind is really all over the place. Before I married, I didn't really know if I wanted children, as I thought I was too career driven and selfish to even consider it. Funny how finding a true partner in life can really change how you feel about something like that. I never questioned that one day Brad and I would have children together - he's a natural mentor and I just couldn't him imagine not teaching his own children how to do things.

I am glad we took our time to get pregnant, we needed some time together where one of us wasn't in school and we weren't both working 2 and 3 jobs just to make ends meet. Our thought process is that we needed to really connect as a couple before bringing kids into the family... because when they grow up and graduate... it will once again just be the two of us. When we did decide we were ready, we knew God would provide us with the right timing. Just when the 16 hour days were over and I was settling into a slightly more relaxing work setting at LSU, we got pregnant. Even the timing was dramatic, as we found out when we evacuated from our home to bunker down for Hurricane Katrina.

In dramatic fashion, the pregnancy was not usual - as I carried 8 lbs of EXTRA fluid with Braden. After bi-weekly sonograms revealed his organ functions were normal and his practice-swallowing seemed normal, we weren't given any reason to worry. Having never been pregnant before, my horrific tear-jerker back spasms would later present themselves as labor pains - yes, I got to have back labor. Lucky me. They gave me the epidural, and it was nice - but did nothing to touch my labor pains. They gave me morphine, although I warned them I might be allergic. Sure enough - after an urgent C-section, Braden would come out blue, and mommy wasn't breathing enough on her own and spent a night in ICU just like Braden on oxygen.

Retrospectively, we know that Braden is a POOR swallower, hence all the extra fluid. And I think we will find a new Maternal Fetal Medicine doc... not that I could expect them to have any kind of diagnosis for Braden in the womb, but I was certainly not given any reason to worry about him. So in addition to all the emotion of having a first baby, I was also trying to deal with the difficult first days where they were telling us things were definitely not right with Braden, but they just couldn't figure out what's going on.

Once we knew our little boy would not be "normal", I had to adjust to all my broken dreams of what I thought life would be like with our son. Brad seemed to take it all in stride and really helped me realize that I too have always been an optimist, and have handled every difficult situation in my life with optimism, hope, with a little dash of reality and healthy sense of humor. With that, I gave it all to God, and He has lead us on our journey of hope, despair, joy, anxiety, anger, love, optimism and faith.

The divorce rate among special needs parents is 80%. Perhaps it is because Brad and I weathered many storms early in our relationship, but we both feel that our situation with Braden has only made us stronger as a couple. I think the thing we were both afraid of the most has become the biggest blessing we could have ever been given. We only prayed for a healthy child, but that's not what God chose for us. It's hard to believe the thing I was most afraid of could have been the biggest blessing in my life. Another lesson about just giving your life to God... He knows what's best and when you open yourself up to that, He really will bless you ways you cannot fathom!

So before we expand our family, we go the chance to reconnect again on our recent trip to St. Lucia to celebrate our 10 years of married life together. It was strange to just have one another to worry about, and a vacation well-deserved and very much worth it! Once again, we are just taking our time, and telling God we are "available" to have another child, as I'm sure He would be laughing about whatever "plans" we might be making:-)

My son is outliving his prognosis by two years now, and we look forward to celebrating another half birthday in October. We continue to enjoy every day we are given with him. Our marriage is also beating the odds, and I look forward to another 10 years with the man God chose for me.

Have a wonderful 4th of July holiday, and thanks for checking in on us!
Kodi, Brad & Braden

Brad & Kodi celebrate 10 years

2010-06-18T18:52:00.006-05:00

To celebrate our 10 years together, we planned this trip to Saint Lucia in the West Indies, southern caribbean starting two years ago, to renew our vows to one another. These past four years with Braden have been anything but easy, and as we plan to grow our family, it was time for us to renew our commitment to each other and reconnect before we bring another life into the world and our home. Raising a special needs child certainly has it's challenges, and raising a terminally-ill child is all that more stressful.

Divorce rate among special-needs parents is about 80%. Research shows that special needs parents also retain 50% more cortisol than our parental counterparts with the same caloric intake and exercise levels. So much of this seems unfair... but our situation has made us stronger as a couple, and we are resolved to make it through all this as a couple and not just individuals. We are blessed beyond expectation by raising our little man, and have incredible people in our life because of him.

So as we took off for the islands, it was very hard to leave Braden, and mommy was very emotional about it. But daddy drove us to the New Orleans airport and arrived in St. Lucia via Atlanta. The road to the hotel was very twisty and turney with lots of switch-backs and hairpin curves - after an hour and a half of that, mommy did not feel so hot.

We got things lined up for the vow renewal, enjoyed time at the pool, took scuba lessons, went on an ATV tour that got us incredibly muddy after a morning rain, rented jetski's, enjoyed a rainforest canopy tour, took a day-long tour of the fishing villages and grand twin mountains known as the Pitons that also allowed us to explore a drive-in volcano, sulphur hot springs complete with hot mud, a freshwater waterfall and grand mountainous views. Brad went on a few scuba trips, and we both enjoyed some time in a private beach cabana, got massages on our "wedding" day,and explored the other two resorts for dinner ventures. The island was simply amazing, and the people were very warm and welcoming, living up to their mantra "No pressure, no problem".

We hope you enjoy a few of the photos...
10 Years of Love (July 1, 2000)
Kodi & Brad

30th Admit

2010-06-18T18:36:00.002-05:00

Sorry it's been awhile, but life is all crazy around here. We had Braden home for about 4 days, and then we couldn't keep his oxygen sats up... so we went for an admit and boy was it crazy! First, his port would not cooperate. 3 different nurses tried to access, and the third was at least able to flush the port, but it meant we had to start a protocol on the port known as TPA... it's an enzyme treatment meant to help dissolve the probable sheath that has formed just behind the port. The good news, is that the protocol WORKED!!

We finally got up to the PICU to address his respiratory condition, and the best news is that we got to finish his meds for the infections via IV, which has a quicker, stronger reaction to his infections.

We were getting so close to our trip, it made us incredibly nervous, but Braden reacted to the medication well, and he showed immediate signs of improvement. So we took the little trouble-maker home, two days before mommy and daddy were set to fly off to Saint Lucia.

So Latacia moved in with Braden... and we were off to St. Lucia!! More on our trip next post!

29th OLOL admit and back home

2010-05-13T13:12:00.004-05:00

(Braden at OLOL)

After 4 1/2 days in the NICU, Braden's medical team agreed we were ready to head back home, and keep treating his 5 trach infections at home with 2 oral antibiotics (okay, they are still 'oral' even though we administer through the G-tube) and nebulized tobramyacin. This time the docs made sure we had all our scripts filled BEFORE we could go home. Last time it took 3 days for us to get all of them.

So Braden is already feeling better and just more "juicy" than usual - lots of bibs and suctions through the day. Wouldn't you know it, our friend JazMyn was hospitalized yesterday and released to treat her very own strep infection at home, for fear she would catch something else while hospitalized if she stayed. So now the princess and boss of Braden is taking her own medicine too. I TOLD YOU these kids always get sick at the same time!

JazMyn and LaTacia are gearing up to come stay at our house in a few weeks... soon Brad and I will be leaving to take our 10th anniversary trip to renew our vows in St. Lucia. We've been planning it for two years, and faced many hurdles trying to make it happen, but we really want to reconnect before we start trying for another child. Yes, we've decided we are ready. It was a very personal decision for us, and one that we've been weighing ever since our diagnosis Fall 2008. But 11 rounds of genetic testing have come up with NOTHING.

Braden seems to be that fraction of a percentage where Leigh's just happens with no real explanation. While there is a genetic form, it's unlikely that we fit in that category at this point. We know of several families facing this disease, and of all the families, we've only heard of one of them having two children with a recurrence of the disease. I think the real push we've felt to try again, is that we were ready to adopt a child in the hospital the same time as Braden on a ventilator because he needed a home, and if we were ready to take a child home that is not even ours and has medical needs, then why wouldn't we be willing to care for another of our own, special needs or not? I think it was then that we felt God was calling us to have another. I know that everyone may not agree with our decision, but I hope you can at least respect our decision that we have not entered into lightly by any means.

The world that has been shown to us through Braden, shows us that God does not make any mistakes. God provides many blessings through the most difficult of situations, and we still have to be willing to trust that He will lead us to the right decision. So yes, we are ready, but the WHEN is still in God's hands, if that in fact is His will.

So we are excited to head to St. Lucia for our first vacation since our honeymoon, with a chance to reconnect with one another, and re-energize our relationship and our spirits after a rough 4 years raising Braden. We hope to have many great photos to share once we get back... we leave on May 25 for 9 wonderful days, and will renew our vows on Memorial Day while we are there. Pray for us to have a safe journey, pray that Braden will stay healthy after this recent "tune-up" for LaTacia, and that LaTacia and her family will be given any guidance from above necessary in our absence. It's a big leap of faith for all of us, and we are so grateful for LaTacia and her family to give us this opportunity. Let's also pray that Braden remains healthy and behaves while we are away for an uneventful journey here in LA while we are gone for a little over a week. JazMyn will have lots of adventures to tell about how she moved in with her "white brother", like she calls Braden - adorable, just love that. I know Braden will enjoy having her so close for those days we are gone.

Thanks for checking on us,
Braden, Brad & Kodi

Another Mother's Day in the Hospital

2010-05-08T12:45:00.005-05:00

Braden's calendar buddy & seizure fighting friend, Addie Claire

Well, Braden has not been feeling well for about 8 days, fighting the yucky green junk. We began intense nebulizer treatments and diligent cough assist, extra pedialite all to help thin his secretions and keep his airway clear. After 5 days we saw green become yellow and an increase in his usual "juiciness", meaning things were starting to thin out.

Then 2 days ago he started dropping his oxygen saturation and started running low grade fever. We gave motrin a few times, continued diligent breathing nebulizations and sleepless nights, as Thursday night turned into a marathon of 4 cough assist and neb treatments, a trach change, and even vest therapy. He dropped his sats down to 69 and turned blue - hadn't seen that since before he got the trach. Some of it was due to airway issues, and the other half due to his stubborn "clamping down" he does when he has a sneeze or fit of bad attitude (remember when we would hold his breath as a baby when we gave him a sponge bath??). We put him on some oxygen, and his sats only stayed at about 91 - 93 even with the help. We decided Friday morning, even though he had done better for a few hours, that we would take him in.

Typically, once we supplement oxygen, it's 24 - 48 hours that we end up in the ER. This time we decided to move ahead of the curve. Getting him accessed through the mediport in the ER was a giant ordeal, as has been the case sometimes - but they finally got it. Blood gas, CBC, and chest xray all showed pretty normal readings, but we also brought in a sputum culture to get thing growing in the lab.

Today they said the cultures are growing the usual suspects - staph and maxilla (I think). They will wait to administer any antibiotics until tomorrow to see if it's really needed. My guess is they will add something tomorrow - as he continues to secret mucous out of his eyes and his g-tube area is "yucky" - indicating he's fighting some kind of infection.

While we are here, the pulmonologist wants to address his leaky trach and finally try the TTS trach - he thinks it will help his oxygen saturation level and function in some ways even better on the ventilator settings - as they aren't quite where they should be because of his leak. His leak usually just sounds like a snore:-)

So that's all for now... we got to spend last Mother's Day outside of Our Lady of the Lake, but evidently, this is Braden's idea of mommy-son "quality time", so we will be here for our third Mother's Day together in the hospital. We started that way, celebrating my first in the hospital with him in the NICU, the second in the PICU, and now a 3rd in the PICU. It certainly makes me give thanks for our special snuggles and our struggles too. He proves he is a fighter over and over, and that prayers of all those looking in on us really do get answered - GOD IS SO GOOD!

As Brad and I prepare to take our 10-year vow renewal trip to St. Lucia, we are thankful to have time to really get Braden healthy in time for our trip away. LaTacia, our absolute God-send of a sitter will be moving in with Braden while we are away, and JazMyn will have lots of time with the little boy she affectionately refers to as her "white brother":-) We are thankful for Braden's "daytime mommy" LaTacia, and the other caregivers at Kidz Korner who also learn to care for him - Christie and Ebony, and of course Ms. Carolyn, Tacia's mom. We love all of you for loving our son and providing a safe and warm environment for him while allowing us to earn two incomes to provide for our son.

Happy Mother's Day to our own Mothers - we love you for all the special ways you love us and our son. Happy Mom's Day to all the moms and grandmoms out there - your work is evident and appreciated!

Braden, Kodi & Brad

FOUR YEARS OLD!

2010-04-28T10:45:00.004-05:00

Braden getting "Happy Birthday" sung to him from the Wilson extended family...

Although we celebrated Braden's life at the Seize the Day walk two weeks ago, this weekend was his actual birthday. We snuggled, cuddled, stretched, got a bath and a haircut - big day in Braden's world. He was very content and satisfied Sunday. Mommy and Daddy had KS steaks, grilled veggies & fresh strawberries and pound cake muffins to celebrate.

As I reflect on the four years I have been blessed to be the mother of a child with a ministry that knows no bounds, I am content too. We've traveled great distances to ensure our families have had chances to know and love Braden. We've traveled great distances to see specialists for answers and guidance. We've traveled many times on that emotional roller-coaster with Braden over his health, his comfort, his care and his life expectancy. I'm trying to take a page from Braden's book... where we are now focused on QUALITY of life, and I want to do the same. We have accepted we don't know how many more tomorrows we will get with him, we've accepted he won't be president, graduate from high school, play sports or ever be able to tell us he loves his mommy and daddy. We relish the today's that we have to snuggle quietly with him, as we silently grieve the dreams we once had for our future son, and silently thank GOD for all the blessings we couldn't foresee when our journey began.

As parents, I think our biggest fear was really having a child labeled "disabled" or "handicapped". But now I am so grateful to have a child who has given me so many lessons on life. How foolish I was to let fear of that unknown possibility overshadow the multitude of blessings that would later be showered upon this family. I would have missed out on so many blessings, and so many amazing people in our life, if Braden was not everything God intended him to be.

Today my prayers are of thanksgiving for all that's been brought to our life with this little angel. I pray that when the time comes, I will be OK when Jesus comes to take him back from me, knowing he will be fully restored and one day I will get to know what a hug feels like from my own son, and to hear the words "Mommy" or "I love you".

Today we will thank God for his miracles.
Today we will live in the moment.

Thank you for continuing to be a part of our world, and showering us with your love and support near and far!
Braden, Brad & Kodi

Seize the Day Walk and Birthday Party

2010-04-10T20:51:00.005-05:00

Today we celebrated Braden's FOURTH birthday (can you believe it??) at the Seize the Day Walk. Many friends and family could not make it today, however we were blessed with many who could make it and blessed with PERFECT weather!

We celebrated with Braden's Team BEE-LIEVE on LSU's campus today. Good food, great friends, wonderful weather.

Braden was slightly fussy the past few days, but we think he's passed a very small stone, which could mean the kidney doc's plan to break them up with Poly-citrate might just be working! Braden only seemed fussy, not in extreme pain, so our hope is that God is giving us a break on this one.

Enjoy the pics, sorry it's been awhile. We are just trying to enjoy our time with Braden and make the most of the time God is giving us with him. Thanks for your continued support and love!

BRADEN, Kodi and Brad

28th admit to OLOL

2010-03-07T17:47:00.004-06:00

We brought Braden in on Wednesday, he quit peeing on a regular basis, and was only going once every 12 hours... not at all his usual 8 times a day. It was a bunch of other "little" things that was adding up to a picture of things just not being right. We had to put him on oxygen because he wasn't keeping his oxygen saturation up, his bm's had gotten really loose and infrequent, his temperature was low, etc.

They started running tests and decided to admit him to the PICU and treat for possible sepsis... they thought this because he was hypothermic and not giving output or possibly fighting an acute virus. Once we'd been on the unit 24 hours, the tests showed he probably was NOT septic, but definitely had other things going on. They had started antibiotics (generic) right away... so 2 days later when he was diagnosed with a tracheitis (again), we were already 2 days ahead on that. Later studies would find he was fighting strep pnuemonia bacteria... if you are alerted now, we were too - as this is one of the big ones we had that almost took him at 8 months old. However, this time he's fighting the BACTERIA, not an infiltrated pneumonia in the lungs... so a new 7 day antibiotic will cover us... respiratory all in check now.

Because Braden has a mitochondrial disorder that affects the muscle function, we met with several specialists. We did an echo on the biggest muscle, his heart, and got the all clear there - still don't have to follow a cardiologist in clinic. YAY! Great news that we don't have to worry about that on top of everything else.

We met with the dietician to review his caloric intake and overall volume... her latest chart showed Braden coming closer to the curve for his BMI (body mass index). Great news, as forever his height and weight have been disproportionate and have kept him off the curve for a long time. He still is, but he's coming closer to getting ON the curve:-)

His hypothermia is now a result of the same neurologic disfunction we've seen since birth, we are just used to dealing with the high temperature side, not the low temperature side. He seems to have evened out for 3 days now, not requiring use of the Bair Hugger... which looks like a blow-up air mattress for the pool, that blows warm air down to the patient.

We consulted with the GI doc, and have agreed on a new plan of care for Braden in that area as well. We are seeing a slow down in his ability to break down his food, and in intestinal function, but he is satisfied with our recent adaptations to his feeding regimen. We will adjust some supplementation to address some issues here.

Our final frontier is renal and urology... the ultrasound a few days ago showed Braden's kidneys are more cauliflower shaped instead of rigid bean shaped, which affects how they function. It showed that parts of his kidneys are calcifying, so we are adding supplementation to deal with the build up of calcium, and adding vitamin D and other things to help with the loss of calcium from his bones due to his lack of mobility. His bones are becoming thin and fragile, the vitamins should help address that for now. Tomorrow an ultrasound on the bladder will tell us if it's emptying all the way. The good news is that when the catheter was removed, he's been back to peeing on his own... we just don't know yet HOW well the bladder is doing on it's own.

It's unknown why his urine is carrying so much mucous, but we do know that it's NOT normal, and we will have to continually monitor Braden for future blockages.

We hope to find medication or supplementation intervention to resolve our issues for now, but surgical options may lie in our future. For now, just pray that God will lead our specialists to the answers that are right for Braden.

Thanks for checking on us, our hope is that we get to go home tomorrow, but only time will tell.

Braden, Brad & Kodi

WISH GRANTED!

2010-02-22T14:01:00.004-06:00

So when we were holed up in the hospital in the Fall of 2008 getting Braden's trach, and then his new vent after the first one failed, one of the social workers there helped us fill out paperwork from a grant foundation that grants wishes for children under the age of 3. You can choose from three different packages - one was a gaming/video station, another a toy & music station, and the last a "comfort" station which would provide books and songs and maybe a chair.

After long discussions with our wish coordinator at Children's Wish Foundation International, Emily concluded that a traditional "comfort" station would not best suit our needs, and we asked her if we could just focus getting Braden a comfortable chair for his room, where mommy or daddy could hold him comfortably, as he has long since outgrown reasonable use of the glider.

With Emily's help, we were able to find a leather chair that glides and reclines, so that when the time comes for us to sleep with Braden, both parent and child will be comfortable. AND BOY IS IT!! Braden spent Sunday afternoon in the chair with Mommy giving it a good test drive. Braden was SO happy and content, it just warmed my heart to know that he was happy snuggling like that, something we don't get to do very often since cuddling like that requires time in the front room on the vent battery. And although mommy has lots of back problems, after she fell asleep with Braden in the chair and got up - she didn't hurt either!

PRAISE GOD for his many blessings and bringing our family a little bit of "comfort" with our little man. Hard to believe he will be 4 this April... we are thankful for every day we still have with him.

The cookbook is coming along and might be ready for distribution this summer!! We will keep you posted.

Thanks for checking on us!
Kodi Brad & Braden

Better late than never...

2010-02-04T15:42:00.007-06:00

Our Christmas trip home was quite the journey - as most are with us. It was a total "Griswald Christmas" as the craziest little and big things seemed to happen... from the van not starting to banging doors into barricades to trying to find power for Braden when we lost it at the farm.

It was so great to see our family and spend time with them. Many wonderful memories - thank you so much.

Braden with grandma Patee

Braden with Grandma Wilson

Braden "singing" to Gram

Betschart boys with their guns

Betschart Grandkids (& uncle Shane)

Wilson Stockings - lots!

Wilson Clan

Icycle at the farm

Feathers my sis uses to make GORGEOUS ornaments!

Ethan & Gram

More pics to follow from xmas soon, and an update from our HOUSTON visit to the Mitochondrial specialist.

Love & Hugs,
Braden, Kodi & Brad

Winter update

2009-12-10T08:21:00.002-06:00

So as the cold weather finally gets here and looks like it will stick around for awhile, so comes the season for Braden to constantly fight infections. For the past 2 weeks he's been on 3 antibiotics. I think he's finally come over the hump, and his tummy is more settled too - making him a much more pleasant "camper". He still has a week left on inhalable tobramyacin, but the oral meds are done.

We've recently consulted with the surgeon and our pulmonologist about Braden's new trach and the issues we faced last time trying to get it in. While I've been hesitant to sign us up for any surgery, as the risks increase for Leigh's patients to be put under anesthesia... the doc finally told us that he thinks the fact that Braden puts out SO many secretions and doesn't have much of an active swallowing reflex, it's contributing to these regular infections we are fighting. OK, now we have a REASON to try to reduce the secretions.

For now, doc has put us on Robitussin and compounded Robinul which is designed to help slow secretions. Some of you may remember that every time we've tried it in the past... within 48 hours we've taken him OFF of the Robinul because it's made his secretions even thicker and near impossible to suction - making a dangerous airway restriction problem. This time, it is a LOW, LOW dosage (hence the need for compounding) and as we are only in the first few days, it doesn't seem to have any negative affects so far. In the new year we will plan for a surgical procedure (which will bring our total surgeries to I think 18), so that we will try getting in the new trach to further assist with the secretions issue.

Some of you might know that one of Braden's caregivers, "Auntie Doreen" was hospitalized last week for stroke that caused bleeding on the brain and swelling in the brain, and has also caused a myriad of other issues and she has declined so much she is now on ventilator assistance. Doreen is the cook at the daycare who also takes care of the kids, and she is LaTacia's aunt, and has worked with her and helped care for Braden ever since we started Kidz Korner. Doreen is a part of our "family" here... and our hearts are breaking as we lift her up constantly in prayer. She should not be this bad off - this was a major medical mistake - these are the things I try to warn you about by NOT using your voice and standing up for yourself. She went to the ER and was dismissed 3 days in a row because nobody demanded the hospital run the correct test to check for what we suspected to be stroke or heart attack. Just please pray for her... she has 4 kids of her own, and all the kids at daycare ask about her every day. Even if she recovers, they say she won't be able to live on her own or be alone after this. PLEASE pray for this family - for they are our family too.

As we gear up to head to St. Joseph, MO, Ford, KS and Wichita, KS... we have lots to prepare for with a road trip like this one. I pray God will give us safe travel conditions so that we may see all of our family this Christmas.

Thanks to everyone who ordered food for Braden - I haven't tallied the total yet, but can say it was a great success! THANKS to everyone who supported us with this venture. The cookbook recipes are finally ready... now to find a publishing company - this will be my "summer project" and we will keep you posted on it's progress.

Thanks for checking in on us, and we hope to update again soon!
Braden, Brad, & Kodi

Another Challenge our Fighter Wins!

2009-11-19T17:35:00.003-06:00

So Braden has been very healthy other than the allergies that are getting everyone around here these days. When I had to get up in the night at 3:30 Tuesday morning I was surprised he was upset and kicking around and not a happy camper. I suctioned him and settled him a few times until 4:30 am. At this time his sats were dropping, but I really wasn't getting much out in suctioning, so I figured he just needed his morning vest treatment which comes at 6 am.

Oxygen seemed to help, but after vest therapy he didn't seem too much better. And once we were on the road to daycare, I noticed he was doing those three little "recovery breaths" like after you've been crying which had me concerned at this point - because he still wasn't acting like he was getting sick. Braden has a few tell-tell signs like gunky eye stuff or purple eyelids when he's not feeling good. So we put him on oxygen when we arrived at daycare.

I had already called the doctor's office 5 times and left messages in 3 places at this point, so I headed to work. LaTacia calls me about a half hour later to say that Braden is acting like he's kind of gasping for breath. Not good. I tell her I am on my way. As I am getting over there I am of the mindset that I will be taking him straight to the ER... but I'd so much rather him see the pulmonologist, because the ER folks don't always have a great grasp on his respiratory issues, and they will probably have to call them for consult to come down anyways.

So I finally get the nurse at the pulmonologist on the phone who asks me some questions and suggests that I should just TRY to change the trach first, and if that doesn't help, bring him on in and we will get him to somebody. So I get to the daycare and Latacia helps me get Braden prepped for trach change. We change out the trach and he immediately coughs up some stuff that's been building up, and see that the trach we just pulled out had a mucous plug - YUCK!

Not just gross, but when I ran water through it to clean it out, I could tell there was only a TRICKLE of water and my poor baby had been trying to breathe through that tiny hole! No wonder he was gasping for air! I felt like a bad mom for not recognizing that this was the issue, but it was our FIRST plug. The signs weren't clear because I was able to suction some, I was able to go a little past the normal suction line - turns out it was probably bunching up in the line.

Crisis averted, no visit to the ER. Within two minutes Braden was breathing normally again. His strength and fighting spirit never cease to amaze me - he is one amazing kid! Thank you God for a solution that worked and for being with our boy while we worked through how to fix it - our little guy is resiliant!

The picture is from our photo session in the park a few weeks ago - he and Jackson were "taking five" while mommy and daddy posed for pictures. Our little guy wasn't super cooperative and got bit on the corner of his eyelid by a mosquito that swelled up pretty fast - so he wasn't much for photos that day.

This Thanksgiving be thankful for all the little things you take for granted every day - you might have to slow down to think about what those are. The crooked smile of your ornery child, the way your kid skips down the hallway, the way someone you know always greets you with a smile... be sure to tell those you are thankful for why you are thankful for them, for you never know when their time may come and you miss the chance to tell them how much you care.

Mommy was asked to write for Baton Rouge Parents Magazine, who will be putting out a Special Parents edition. The assignment was to report on daycare options for special needs children in Baton Rouge. If it's not heavily edited and chopped down, you will get to see all kinds of my personality come out. I'll be sure to post a link when it's available, I'm not sure when they plan to go to print. I think early December. Thanks for checking on us,

Kodi, Brad & Braden

Lessons in the fog

2009-11-15T07:23:00.009-06:00

Special thanks to Latacia and Annette for helping work the table at Mistletoe Market

As I drove Brad to the airport this morning to attend his grandfather's funeral, there was a blanket of thick fog on the ground. The fog was thick, making it difficult to see too far down the road. It was odd to me how strange things looked in the fog, and how unfamiliar things looked that are very familiar.

As we made our way through the fog, it struck me how very much like this fog was like the storms we pass through in life. We are so overwhelmed by our circumstances that we can't see the forest through the trees. All we can really deal with are the things that are right in front of us, because in the difficult times, even the most familiar can seem strange and uncomfortable. We wonder why we can't see farther down the road, and it's uncomfortable to think that we can't see what's coming up ahead.

1 Corinthians 4:12 tells us "Now it is required that those who have been given a trust must prove faithful." We have to trust that even though we don't understand in the storm why things are happening, that God has a plan for us, and that He will give us the tools to cope when we need them most.

So the Mistletoe Market this weekend proved to be much less fruitful than we hoped. I'm trusting that God has another plan and that I won't let this cloud of disappointment ruin what the road ahead might bring. The plan is now to put everything(baby bumble items and bottle art) on clearance. You can look up items on clearance at: www.bottleartbykodi@blogspot.com and www.babybumbleboutique.blogspot.com) This process demonstrated just how scattered my creativity can take me, and it's allowed me to reorganize myself and focus on the things that will produce the most results. The sewing and the bottle art was therapeutic for me in ways, but probably not a long-term venture. The motivational magnets I think have long term legs, although surprisingly didn't do awesome at the show - but I think a lot of that had to do with my "eclectic" mix of items on the table. They don't take too much time like the others and will let me flex my creativity in other ways.

I want to thank EVERYONE who came by the booth and supported us at the show - we love you and we thank you for helping support Braden's medical fund. Each of you who has reached out in ANY way to participate and support one of our fundraisers is very important to us. We feel God loving us through our friends - and we are SO BLESSED with wonderful friends here in Baton Rouge who demonstrate their love and support. Our faith is tested constantly by raising a terminally ill child, and we wouldn't be as strong without your supporting arms wrapped around us.

I've recently been asked to write for a Special Parents magazine, and hope to use my voice there to advocate for change for special needs families through the media! Also Brad and I are getting more involved with the local Epilepsy Foundation of Louisiana and our contacts and skills can be put to use there to help a practically entirely volunteer organization get a little more organized in the marketing and event areas.

So I guess I'm busy doing Spring Cleaning in November, but it does feel good. It will let me focus on things that might be opportunities to REALLY make a difference. I'm thankful for the creative outlets I've explored for the last year, and thankful that I have NEW avenues to explore that better fit my talents. I'm sure Brad will be thankful that the "clutter" will be lightened up some, and I hope Braden will appreciate the extra snuggle time. I'm glad God gave me an outlet for everything and has now lead me down a new path for my creativity... I'm trying to let Him lead me down a path that I can't quite see the whole picture for, but I'm hoping the fog will eventually clear, and I can appreciate where things are going. For now, I will try to appreciate the things I can see that are right in front of me.

Prayers and blessings to our family who will bury Grandpa James this week without Braden and I - a short trip is just too risky for him. We hope they know how much we want to be there and know we are loving them from afar. Travel safe Daddy... we will see you soon.

Braden, Kodi (& Brad)

Rest in Peace - Maj. James C. Patee

2009-11-11T13:10:00.004-06:00

Braden, Daddy, and Grandpa Patee

Brad's grandfather, Major James C. Patee of the US Army passed away early this morning. He was a man of strength, courage, character who loved his family and showed his grand and great-grandchildren love, support, and kindness. It's entirely fitting that our family hero would pass away on this Veteran's Day, as I can't think of a more fitting way for us to remember him. Brad will probably have to travel the long distance and short time frame alone, as it would be too hard on Braden to do an up and back in the car for over 34 hours... but we will be going with him in spirit.

Mommy will be running a table at Mistletoe Market (holiday shopping extravaganza) to raise funds for Braden's Medical expenses. The show is this saturday at the Sheraton Atrium from 8a-5p. We hope to sell out of all Baby Bumble Boutique items (blankets, burp cloths, valances)www.babybumbleboutique.blogspot.com , all the items in the bottle art section (www.bottleartbykodi.blogspot.com), and the golf head covers. Additionally, the very popular motivational magnets will be offered at the show on special (www.motivationalmagnets.blogspot.com) but these I can ship to anyone interested in affordable teacher gifts, friendship gifts, etc. SHOW SPECIAL is 1 for $8, 2 for $15, 3 for $21, 4 for $25 or 5 for $30 - plus $7 shipping for every 5 shipped.

We tried a re-shoot this weekend on the family photos - we will see if anything came out - it's all about getting our "particular" little man relaxed and happy to get good shots. Mommy and daddy can fly through about 30 shots in no time, it's getting the prince while he's cooperating that's making it tough!

We will post after the show to let you know how we did - pray that we sell out of everything in stock and only have special orders to fill after the show!!

Thanks in advance for the kind thoughts and prayers for the family, as we say good-bye to our beloved family member who will now be watching over our own "little soldier".

Braden, Brad & Kodi

Fundraising Update & Photo Shoot

2009-11-01T19:07:00.005-06:00

Braden was selected to be photographed for the LA Faces of Epilepsy calendar, so when orders can be made, we will post the information on here for you to order one to support local families with epilepsy. Today he met some new friends... and made a new little girlfriend who is also 3, suffers from epilepsy, and puts a team in for the walk too... our new little friend Addie Claire! She was so precious to Braden... she was sharing acorns with him that he would hold, and she would talk to him and Braden was talking up a storm to her getting her attention! She would blow him kisses and say, "I like him" and "He likes me"... too cute!

I took a few of Daddy and Braden too here.

So the posts have slowed because we have so much going on. Braden is doing great right now health-wise, but Brad's grandfather has not been given much time, and Kodi's bff from college - Nicole - her father passed unexpectedly so a road trip to be with the family has kept us pretty busy.

We are getting ready to enter a craft show called Mistletoe Market at the Sheraton Atrium Nov. 14th to raise money for Braden's Medical Fund. We will be selling baby blankets, burp cloths, 12 months scripture magnets, bottle art, and golf head covers! Our goal is to sell out of everything and only have some custom orders to fill after the show.

The soup & dessert fundraiser is going well! We must send a special thank-you to Norwood Baptist Church in Norwood, LA... a friend from LSU goes to church there and Braden has been on their prayer list for years. Our wonderful friend Mandy and her church did a spaghetti dinner fundraiser for Braden and sent us a check!! THANK YOU for continuing to pray for us, and for going beyond prayers to take action to help our sweet boy!!

More thank you's to friend Stacie Coles for getting the word our about our fundraiser... her friends and family at Parkview Baptist Church's "Sunshine Class" and Tuesday Morning bible study have taken collections for Braden, and we appreciate it so much! Thanks for your prayers and love!

Thanks for checking in on us...
Braden, Kodi & Brad

Walk a day in my shoes

2009-10-19T08:23:00.004-05:00

When you have a special needs child, especially one that has lots of medical needs - nobody tells you how hard it's going to be, and just how many battles you will face daily. Battles with your emotional state, battle with dreams you had for your child now lost, battles with the state agencies to get your child services, battles with therapists to provide the best possible care needed for your child to push them toward progress, and the never-ending battles with your insurance company and the vendors they don't pay on time... leading to battles with credit agencies over your insurance company's mistakes that have lead you to this situation.

Last week and this week I am working on clearing up some medical bills. I only do this about once a quarter, because I just can't live my life being that angry all the time. Why would I be angry? Below was the scenario to clear up ONE single medical bill that was not paid by insurance and turned over to the collection agency for reporting... here we go:

1. Call the insurance company (let's call them UHC to shorten the typing here) to see why this vendor's bill had not been paid.
UHC says they don't see that this was ever filed with them.
I say the vendor's statement shows it was denied by them and gave them the dates.
I am told that this does not exist in UHC's system - and I am going to have to call the vendor to get them to send it in for payment.
(35 minute phone call)

2. I call the vendor who tells me what is on the statement is accurate and they reaffirm that UHC denied the bill.
I am told I need to call UHC back and should probably ask for a supervisor.
(25 minute phone call)

3. I call UHC back and they once again tell me they can't find it in their system. I ask for a supervisor.(This happens A LOT, so you can sense my building frustration and anger - I mean - hello - do you people know how to access your own system??)
They find it in the system and that it was denied. They tell me they can put it through for payment again, and the process will take about 10 days.
I said I've already been sent to collections on it because this was supposed to be paid by UHC already and I want to speak to another supervisor.
Next supervisor says yes, it should have been paid and the denial reasons in the system don't make sense. He tells me it will be put in rapid review and someone will call me back in 48 hours.
I ask for another supervisor, because I don't have 48 hours, I am in collections over your mistakes.
Next level supervisor approves payment of the bill, after I walk him through the reasons it shouldn't have been denied in the first place, and says a check will be to my vendor in 10 days.
YAY.
(Phone call takes 75 minutes to complete)

3. I call the vendor back with all the information about how this bill will be paid and their check has already been approved. They notate my account and tell me I need to call the credit agency myself. But when they get paid, they will notify the agency.
(phone call takes 20 minutes to complete)

4. I call the credit agency to alert them that this bill will be paid to the vendor. They say they will notate my account, but the vendor must notify them before they will remove it from my credit report.
(phone call takes about 20 minutes)

So finally, after all this... I still have balls in the air I must come back to check on in 11 days with all parties to ensure payment has been made and it's been removed from my credit.

People - I want you to remember one thing here - this was for ONE SINGLE medical bill!! It took 4 phone calls, and an hour and 35 minutes to TEMPORARILY get things in order on this ONE SINGLE medical bill.

Last week I had to process 6 medical bills, and have 3 more waiting for me this week.

I repeatedly tell the insurance company that this is undue stress on a family that's obviously already so taxed financially and emotionally and that this is not right. I realize that I never talk to anyone who can actually do anything about it, but it does get me (eventually) to the right people who can at least do something about my account. I tell them that we don't put their monthly premiums into "review" at our house to determine if they get paid or not, and they shouldn't treat us like this when we pay our premiums always and on time - that they should not be putting this undue burden on us all the time and that they need to pay the things that our coverage outlines as covered. DANG IT!! (I'd like to use stronger language here to express my total frustration, but I hope that you can kind of get the picture and insight into this ridiculous circus we are made to play for EVERY BILL that comes in.)

I thank God that He provided me with a loving husband, who after seeing me go through this for over 3 years was actually in the room with me one day last fall when trying to handle one bill... and got nowhere on the phone after 3.5 hours... got his own upfront and personal front seat to what it's really like. He at least agreed to take over handling the rest of our finances. Now I handle medical, and he handles household. A true partnership - and I love him for it.

We did the VICTORY WALK for breast cancer at LSU this past Friday, so here are the pics from that. We walked in honor of my sister Shala - 3 time survivor of breast cancer. We are so blessed she is still in our lives and she is an inspiration to all of us to never quit fighting and never give up. I'm surrounded by people of miraculous strength. My mother by all accounts barely made it here - as a baby had a complete blood transfusion and they didn't really know if she was alive or comatose for about 10 days until she wiggled her big toe! And I don't have to tell you what a fighter my son is. And you wonder where I get it from...

Working on filling all those orders for the fundraiser - thanks everyone for your support!!

Love,
Braden, Kodi & Brad

And if you like us even more... another vote

2009-10-14T13:53:00.002-05:00

This one can win us an AMEX card to buy Braden's mito supplements!!

By Parenting

Vote for us??

2009-10-14T11:31:00.001-05:00

Kodi Wilson

http://baby-braden.blogspot.com/

"How is Braden?"

2009-10-11T09:42:00.009-05:00

Although modern rules of society have laid this out as a common pleasantry for us to exchange with one another as a follow-up to "hello"... it's really quite a loaded question, regardless of who you are asking. Most often, we simply reply with "good", even though many times things are far from being good. It breaks socialization patterns for us to REALLY say how things are... I think the answers we commonly give really reflect the current attitude of "HOW" we are handling our current life crises. Yes, I meant multiple yet separate collaborations of crisis totaling up to the plural form - crises. So the "good" we share with one another is hopefully more a reflection of our state of attitude in handling our current situations.

We as Braden's parents in responding to those questions about Braden, I think try to respect those who ask about him with a little more honesty into our current situation. We know you are asking out of genuine concern, and therefore we try to respect that with providing more of an insider's view into our current situation, without overloading you with all the details, unless of course, you ask:-)

With Braden we usually have a few standard pat answers: good,OK, struggling a bit, or not well.

"Good or really good" usually means his health is in decent shape, he is sharing a little of his attitude in being messed with, and his seizures are down to a minimal less than 3 a day.

"OK" usually means he might have a cold or fighting asthma, might be having about 5 seizures a day, fighting a fever and is crankier than usual.

"Struggling a bit" usually means we are fighting a bronchitis or pneumonia at home, fighting a fever, fighting a cranky baby who is restless and having more seizures than normal.

The "not well" is usually reserved for those times when we are hospitalized, because Braden's status can vary from one hour to the next, and we've not been well long enough to warrant a better status condition.

Braden's current status would probably fall between "Good" and "OK" these days. Mostly, we have overcome the respiratory viruses we were fighting this last month, but just when we think things are back to status-quo... Braden has thrown us a few challenges. For instance, yesterday, for unknown reasons he threw us a fever and started having multiple seizures back to back and he just couldn't rest or relax. Last week he decided to start breathing like he needed to catch his breath... obviously nothing a person on a ventilator needs to do. So we are reaching out again to the medical community and our medical team and really looking at everything for Braden including his diet and supplements/mito cocktail. We will be meeting with some new doctors and consulting with others who might be able to help us address specifically the needs of Leigh's patients. We know there is no cure, and we know the eventual outcome - what we are hoping is to find what HAS worked for other patients to make Braden more comfortable long term, as his disease progresses.

We thank you for your continued concern, support, and prayers for our little fighter. We will offer updates on the Fall Fundraiser later this week! The fundraiser will not only help us cover medical expenses... but we hope to raise enough funds to put a nice down payment on a handicapped accessible van with a lift and room for our family to grow by this time next year.

Sending you our love,
Braden, Kodi & Brad

Latest News and Mito Video to share

2009-10-05T08:15:00.004-05:00

So now that Braden has had nearly 30 days of antibiotics and two nebulized steroids, we were hoping for a little better outlook. While his overall appearance and health are MUCH, MUCH, better... Braden still doesn't seem quite "normal" for his baseline. He has shown signs of extreme aggitation for prolonged periods, and some strange breathing patterns. The respiratory doc should be seeing us in the next few weeks to address what we can, however there is some indication that this is simply the progression of Leigh's Disease.

This may mean that there might not be much we can do to fix the problem, and rather we must do what we can to deal with the symptoms and side-effects to minimalize their impact on Braden's overall health. For instance, Braden's lungs sound the most clear they have in a very long time - however - he seems to be struggling some at night with random asthma attacks, a return of the thick mucus, and a need for overnight oxygen, which we have not needed in quite some time now except for when he is sick.

Braden's follower "Layla's Dad" recently posted this video on his blog, and I thought it might really help some of you understand what living with a mitochondrial disorder is really all about, in simple terms. I hope you enjoy the view:
http://www.youtube.com/mitoaction#play/all/uploads-all/1/6_2oN1oTK-g

We have finished up Halloween costumes, and this year should be lots of fun as mommy goes as the Wicked Witch of the West, daddy will be a witch's "winkie" guard (you know, the ones that chant "oh-wee-oh, oh-oh"), and our precious Braden will be going as a flying monkey! A tribute to our KS roots - we hope everyone will enjoy the photos later this month:-)

LaTacia was kind enough to babysit and allow mommy and daddy a date night, daddy got surprise tickets to see comedian Ron White - thanks Tacia!!

Thanks to everyone who is ordering food this fall for his fundraiser - and EVERYONE can stay tuned... SPRING will be a silent ONLINE auction (join in the fun from anywhere)!! This year we are trying to gather funds to put a down payment on a converted handicapped van to transport Braden, by this time next year.

We will post when or if we have any more news to share on Braden's condition.

We thank you for your continued support, love, and prayers!
Braden, Brad, & Kodi

Avoid Medical Mistakes - USE YOUR VOICE!!

2009-09-17T10:46:00.002-05:00

Most of you know we went to the hospital this month for a “routine” surgery. Since I’ve been at this awhile now – overseeing hospital staff as they provide care for my son, I’ve learned that you just cannot “trust” the system and that everything happening to you is correct, or the way it is supposed to be. I told you we were nearly dismissed without having been given a FEVER BLOCK, the WRONG DOSE of heparin to lock the mediport long term, and if I hadn’t used my parent voice and stood up for what was happening… we also would be in line for a new, unnecessary mediport surgery.

Listen to what your “gut” is telling you, and don’t let nurses or even the doctor bully you… YOU are the parent, YOU have the final decision on any medical care… they can only make recommendations and suggest a plan of care. Nobody knows your child better than YOU do… you know when something just isn’t “right” – that’s the little voice in your head you need to listen to. I’m not saying be a hypochondriac, but trust in your instincts as a mother/parent! This advice is not only for mothers and parents - but for ANYONE who has a family member in need of a medical procedure - there are no stupid questions to ask of your medical staff, and remember that YOU are in charge of the situation.

This poor mother was not persistent with the medical staff, and a medical mistake cost her the life of her child. You know that we too have been there, and a machine malfunction nearly killed Braden last fall. Looks like a good book – here is the review. http://online.wsj.com/article/SB10001424052970203706604574378762626910076.html

I have just felt this little nudge to share our story, so that your family will never be a victim of a medical mistake.

Surgery Cultures back - another infection

2009-09-16T14:11:00.002-05:00

As is customary with a bronchoscope, they do this thing they call a bronchial wash, or a bronchial gavage - which basically means they squirt some saline in their, suck it out, and run cultures on it. Once again, Braden is fighting yet another infection. He has a STREP infection and a H influenza A (not related to seasonal or swine flu) that they are treating with another 10 days of the omnicef (yay for more red, runny, messy diapers)... and a new nebulized medication - colistin, used to treat cystic fibrosis patients and those with Pseudomonis. The colistin has to be mailed to us, as only a specialty pharmacy carries it(and none in Baton Rouge do), so it's a game with the doctor to fill out the pre-auth form, the insurance to "review" it for 24 - 48 hours, then shipping time once all the approvals go through. We hope to have it in-hand for early next week...

But we still get to keep the little guy at home and daycare, as he is not contagious. He has been very cranky, and this probably explains why... as he's been crying at times when we're not changing his shirt or diaper and getting the fake leave me alone cry... it's a cry that means his tummy or throat are hurting him. So lots of extra cuddles for our little patient... funny how they get so cuddly when they don't feel good and just find that comfort in being held. Makes you feel important.

Locally, anyone who would like a flyer for the fall fundraiser for Braden's Medical Fund... let me know and I can e-mail it back to you. (klwilson@lsu.edu) Kodi's Kitchen will be serving up 4 different kinds of soups and 4 different desserts!

Love to all - thanks for the prayers and keep them coming! Hope your fall is going well.

Braden, Kodi, Brad

Surgery Recap

2009-09-10T20:50:00.003-05:00

Daddy teaching Braden how to use the new igun iphone application...

So the day started off OK, and things went pretty smooth during the bronchoscope, and we found out a few things we had kind of already expected. First, we knew from the sonogram Dr. Thomas did in the office that there was some internal granulation tissue in the trach area... and the bronchoscope confirmed that Braden has a little flap of skin that gets irritated by the trach tube. He also injured himself at the end of the trach tube, which we think happens when he has a sneezing fit or accidentally presses on the tubing towards himself. Well this little scratch just wasn't healing - and everytime we were suctioning it was like ripping that scab open with the airjets pulling in the mucus... so for now our instructions are to go in one less CM for suctioning, and to put extra gauze around the trach to back it out a little bit for about 2 weeks to let that internal scratch heal.

The doc also discovered that Braden has like an extra muscle flap in his trach area... kind of complicated to explain, so we will at a later date when we are ready to address how we will "fix" this in the future. But for now all it means is that we will not be putting in the newer inflatable trach cuff until we address this issue.

We will be waiting for biopsy results and share results next week, if there is any news to share. We only anticipate having to treat yet another bacterial infection if anything - no big deal.

So, as in our world, nothing is without incident... the anesthesia team could not access his mediport. And once again our requests to bring someone in from hemoc to access it were ignored (hemoc - hemotology/oncology... the work a LOT with mediports). So they could not access him. This lead our doc to believe the port was blocked or not working. They sent us down to radiology/x-ray to see if the port was positioned OK, and then brought in someone from hemoc to access him (PRAISE GOD, AND SHE GOT IT!!) so that they could shoot a dye into the bloodstream and see if there were any blockages... nothing they could see right away - YAY!! Now we know that we just need to find a home nurse with hemoc experience and things will be much better for Braden in the long run.

So after a very long day and an additional unexpected procedure... we can say it was a successful day. I want to encourage any of you who aren't "regulars" to ask lots of questions and trust your instincts as you go throughout the day. I'm glad we paid attention - they almost forgot his fever block medication if we hadn't asked, and they almost didn't heplock his mediport with the correct dosage either - so they had to redo it before we de-accessed the port! It just got me to thinking how many families probably go through the whole experience and trust that everything happening to them is just fine... if we hadn't asked questions, Braden would NOT be "just fine"!! SO don't be afraid to ask questions throughout the whole process - you have a right to know why they are doing things:-)

Normally Braden takes about two days to shake off the grogginess of anesthesia... but yesterday he was bright and alert in post-op. He has avoided a fever and heavy swelling thus far. Brad was not surprised that when he came home, we had done nothing but snuggle since getting home. But he definitely noticed just how snuggly Braden was when helping put him to bed, and said he understood why we didn't do anything else! He was SO lovey and sing-songey too... it was the perfect end to a very long day at the hospital. Just when I started to wonder if this was a false beginning, I went to get the mail - and a FROG crossed my path! God or grandpa letting me know that everything will be JUST FINE if we just rely on God! And so we did...

We will post an update next week regarding the biopsy.
Braden, Brad & Kodi

Labor Day Weekend 09

2009-09-07T15:36:00.003-05:00

Well, we took it easy this weekend and cleaned up around the house. We had some friends over for a bbq yesterday to enjoy some down time and socialization before we head to surgery on Wednesday. It was nice to spend time with friends to socialize and just hang out. Thanks to gram for the cool shirts!

We went to the frog pool in the back yard this afternoon - as it was the first hint of sun we've had since Thursday. Braden really enjoyed himself and really relaxed - enough for a first - poopie in the pool. Oh the joys of parenting... but he's on such strong antibiotics right now, I guess we were silly not to expect it:-) Oh well, the pool got antibacterial cleaning so it can dry and go into storage for another year. And bubba and mommy both got really good baths, and now it's back to relaxing before the big day Wednesday.

Thanks to all for the prayers I know you will be making on his behalf, and ours. We will try to post updates via facebook if you'd like to keep up with our progress. Thanks for all the support!

Braden, Brad & Kodi

It's that time of year - our Gustav Anniversary!

2009-09-02T11:27:00.004-05:00

So our friend Kami from Oregon sent this MOST ADORABLE little frog for Braden.

We have some news to share on his health status.

As you know, he's been fighting the bronchitis which has seemed to clear up with the medications we are almost finished with. But we did suspect there was something going on with his trach area, as he seemed sensitive in that area, and more agitated than his usual "leave me alone" huffiness.

Doc found he has an ear infection, which likely explains the grumpiness that seems elevated. So we are on new antibiotics for that.

He also found that after doing a sonogram on Braden's trach, that there is some internal granulation tissue that will need to be removed. When we go for the bronchoscope and this procedure, we will also put in the new fancy trach tube to try.

As we "celebrate" the anniversary of Gustav, we are reminded just how much our little boy is a fighter for his life - as we remember doing resuscitation on him 16 times when we were evacuated from the storm, relegated to a small closet where we could find power for his machines. We choose to CELEBRATE Braden's life on this anniversary remembrance!! This also marks a one-year anniversary since we were admitted to the hospital too!! (Granted, we did get a re-admit when the ventilator failed... but we don't count that as a Braden admit, that was a machine malfunction admit). We've managed to treat a pneumonia and a bronchitis AT HOME this past year, but have managed to escape the confines of the OLOL PICU.

Thanks for checking on us!
Braden and his parents

UPDATE 9/3: SURGERY SET FOR WEDNESDAY TO REMOVE INNER TRACH GRANULATION TISSUE - PLEASE SAY EXTRA PRAYERS THIS DAY!!

A weekend trip to the ER

2009-08-24T14:22:00.003-05:00

Well, Braden has been getting usual August "junkiness" that he gets this time of year. WHile we tried to get into the pulmonologist for 2 days wtih no avail, we went to the pediatrician who helped us decide we'd better go to the ER so we can get a chest x-ray, cbc, blood gas, and cultures started, since going through the weekend would have meant we'd probably end up there anyways.

So we started him on some antibiotics. Chest xray was inconclusive, but slight elevations in his heart rate, temperature and other tests gave the doc enough to go on and call it bronchitis/pre-pneumonia stage. Today we are still waiting for doctor directons, as we know his cultures were growing things, but we might not be on the right meds, according to the pediatrician.

To make things worse Friday, when the home nurse came, for the third month in a row she had much difficulty accessing Braden's port, even after sticking him 3 times. She said she thought it might be clogged - but my gut was telling me she's not comfortable enough with his port to really determine that. My instincts proved true when the hospital oncology nurses accessed it on their first try (PRAISE GOD - THANK YOU!!).

So we are spending lots of time doing extra treatments and he seems to have perked up a little, but we are watching him close. The doctors orders may change and require a new direction, but for now we are treating him at home.

Keep praying, and thanks for the ones you've also sent up on his behalf. Please say extra prayers for AUNT SHALA who goes in for kidney surgery WEDNESDAY for a stint to make it work again.

Thanks for the continued love, prayers, and support - we thank you and love you all for it!!

KB2

New School Year, New Problems

2009-08-15T14:42:00.005-05:00

So while working at LSU has its advantages, it also has its pitfalls. Brad and I were certain to see furloughs, however as we stand on the pendulum platform that is the Louisiana Legislature, for now has swung back over to prevent staff furloughs, for now.

In Braden's world... things are also just as shaky. His health is pretty good, but of course we are experiencing the usual August yuckiness that comes with the stickiness of the heavy air and oppressive humidity. The shakiness is at the same mercy our jobs are, to the "great" state of Louisiana. But we are still blessed, and finally have pics to share of Braden in his new bath chair that therapist Gayla snagged for us - THANK YOU MISS GAYLA!!

A terrible tragedy occurred here this summer, when a local daycare left a child in a van on a hot day, and the child did not live. While this daycare had been cited many times before for various violations, the state is now trying to avoid liabilities... and has therefore created a state-wide "crackdown" on all licensed daycares. While we are in full support of efforts to ensure child safety, we are quickly learning that some of the policies that were once enforced, are now once again coming into the picture, and some of them do not make any sense at all.

Kidz Korner, where Braden goes, as most of you know has been one of about 40 daycares we contacted in Baton Rouge that did NOT break the laws by ourightly refusing to serve a special needs family. While there is no state agency out there enforcing daycares to uphold federal disability rights law, they certainly have policies in place to make things incredibly difficult for the few out there who do the right thing.

So now we are a family in action to once again stand up for the rights of parents everywhere, not just special needs families. The DSS office in LA is attempting to dictate exactly HOW we choose to administer medicine to Braden. CAN YOU BELIEVE THIS?? Now I'm no lawyer, but I do have common sense - does this seem right to you? How can ANYONE other than his parents determine how my child is medically treated? Even his doctors can only offer recommendations, and it's our choice as parents how to treat our child. So now we've rattled the cages at Dept of Social Services who is over licensing of daycares, plan on getting the Dept of Health & Hospitals involved, and have put in calls to advocacy groups and family law/rights attorneys.

DSS is saying that we must bring Braden's entire medicine cabinet to daycare every day, so that she can administer his medication. Since Braden was born, we as a family decided that only one person a day would ever administer medication, for Braden's protection to ensure his safety. This way it could help prevent any accidental overdosing or underdosing. Not fool-proof, but less chance of accidental medication issues.

And when you look at the photos I've attached, note that this is Braden's medication for ONE DAY, and does not include his nebulized medications with his vest therapy in the mornings and evenings. Can you imagine the ADDITIONAL liability LaTacia would face if she were to administer these daily? The state says that there policy is to "protect" her.

But let me give you a real-life scenario about why this scares me to my core: if Braden had ADD or ADHD, it would be OUR CHOICE as his parents to medicate, or not to medicate. A friend of mine has two children, one with ADD and another with ADHD. When in the care of another, these children each had their own medication to take, and the caregiver accidentally gave the wrong one to one of the kids! Now this incident did not have detrimental life-threatening results... but in a case of an epileptic, medication mix-ups can have detrimental results! Now the state wants to tell me that my childcare provider needs to administer Braden's 11+ medications and try not to get the dosage and times mixed up when she's running a daycare?

So we will keep you posted on the outcome of our newest fight with the state of Louisiana, and the existence of policies and procedures that were designed by folks with NO medical background, NO special needs experience, and NO understanding of the additional stress and strain they are going to put on families who are barely hanging on as it is. I fear that until we have more lawmakers living with special needs children, our nation will continue to ignore the hell their laws put these families through just trying to survive and get by.

For now, just pray that we will be able to break through the walls of ignorance, misunderstanding, uneducation of reality, and unreasonable policies that exist... and pray for our strength to mount a fight that just might parallel David vs Goliath. We thank you for your continued support and prayers!!

The Wilson family,
Brad, Kodi & Braden

Getting in the last of summer

2009-08-02T20:28:00.002-05:00

Well mommy left the boys for another work trip - this time to NYC. She got a little personal time too: saw "Chicago" on Broadway, had dinner with current and former students, and took in a few more sites of the city. Daddy and Braden got some good quality time just hanging out.

We are getting all our therapy evals taken care of right now, so that Braden will be set up for school... and private therapy will come see him right at the daycare!! So we are excited to get all of that set up. We also recently took bloodwork to check his epileptic medicine levels, as Braden is experiencing more than normal grand mal seizures, and it really upsets him afterwards... because he has grown so much, we have added an additional dose of that medication. It will probably take a few weeks to see any change in his seizure activity.

Braden got a pair of shoes for school, since we don't get to buy him a uniform:-) So he got his first pair of light-up Skechers that light up like police lights, and mommy got him an official NYPD t-shirt to go with them! Daddy, as most of you can guess, got his own NYPD baseball cap. We will share another update soon... these pictures are of Braden in his brand new comfy bean-bag chair... and one of him with his new froggie friend from the Shedd Aquarium.

Any extra prayers you can spare right now, we will appreciate them. We think that a few good and decent people in the State of LA have taken and interest in Braden's case, and if all things go well, he might FINALLY get some state assistance... so please, please, please send up those prayers - we really need the help!!

Love to all - the Wilson family

Vacation in Missouri & Kansas - part 2

2009-07-26T20:37:00.003-05:00

Sorry the post took so long... mommy has been busy traveling.

The rest of our trip was spent in Western KS with the Betschart Family... we spent time with Aunt Shala and Cousin Paxton, and time in Ashland with Gram, Papa, Aunt Jenny, Uncle Shane, Cousins Peyton & Ethan... and uncle Cody and cousin Lance made it to KS for a quick visit too. We spent Independence Day in Ashland for the kids parade, the turtle races, the duckie derby and hanging out. We spent the evening popping fireworks with Shala & Paxton.

It was a very nice trip, and we really enjoyed our time with family.

Then we headed to Oklahoma University to do some training with the newspaper sales staff before heading home to Louisiana.

I will post more on my trips later - so enjoy the pics for now!
Kodi

Vacation in Missouri & Kansas - part 1

2009-06-25T22:26:00.003-05:00

So, nothing is ever BORING around the Wilson household, as most of you already know. The evening before we took off, mommy was sterilizing the custom trach tube ($300), while she and daddy were getting the van packed for the trip. Well, we forgot to set a timer, and voila - here's what NOT to do, ever. The obturator is completely melted, but mommy was able to salvage the trach tube, minus a few special "not hand-blown" bubbles where the tubing will attach. Another special needs first - I guess we are always blazing new trails. Maybe we should start the book on what NOT to do:-)

We made our first night in St. Louis. By the way, if you are ever in need of a hotel, DO NOT STAY at the Best Western St. Louis Inn. While the staff was super-friendly and helpful, the accommodations are lacking, to say the least. While in the bathroom, I felt a dripping on my arm... the bathroom ceiling was coming down on us! (This was after I requested someone please come clean the toilet - it was gross). So we got moved to another room, and the new bathroom had black mold on the ceiling, and black mold in the shower to match. How these people can charge a rack rate of $140 a night without a smirk on their faces while they take your money is really beyond me...

We made it to St. Joseph, MO without much trouble... but it wasn't long before the excitement began. We arrived at the Patee household to see the extended family to celebrate a joint Father's Day. But within 20 minutes, daddy went to check on parts of Braden's set-up only to find that his trach tube had come out... no alarms on the vent, no alarms on the pulse-ox - meaning that Braden can hold his own for a time being, which is the good news. The bad news is that after 4 tries, the old trach would not go in, we made the call to St. Joe paramedics, who arrived just in time for us to try the smaller trach size, and daddy got it in on the 3rd try at a funky angle - but it worked - praise God!! The paramedics were there for "moral support" and to help us get Braden at the right angle so daddy could make a good attempt at getting the trach in... we are just so thankful that our training kicked in and we knew what to do!

We spent a few calmer days in St. Joe with the Patee and Wilson grandparents, and Brad's brother Brian, his wife Jenny, and their son Carter flew in from Denver for a long weekend with us. We had dinner Father's Day evening with Wilson extended family, Monday night was treated to dinner at the local Cajun/LSU restaurant so we could watch the first of three games for the College World Series for LSU to take on TX and we won the first game. Tuesday we learned to play "The Farming Game" (circa 1979) and enjoyed family time.

Wednesday we made our way down to Wichita... mommy had to head to bed early not feeling well, and hope the Tigers would win without her cheering them on. They did win the national title - Geaux Tigers. Today mommy was slow out of the gate but feeling better, but Braden was not feeling his usual and slept pretty much all day except for a visit downstairs with more family tonight for a BBQ. Spending good time with Brad's brother Scott, his other brother Brent, his wife Bry, and son Koehn. (Ko-en) Looking forward to more time with friends and family this week... so more details are coming.

Thanks for checking in on us and our travels... seen five states so far this trip - three more to go before it's all over.

Brad, , Kodi & Braden

"New" Chair, Swimming & Daycare Daycamp

2009-06-13T22:35:00.004-05:00

Well, it's been a frenzied but fantastic week in the Wilson household!

First, our AMAZING therapist and friend Gayla, with the help and advice of our friend Doris, Braden now has a great wheelchair! A client of hers donated it, and we were the lucky recipients!! The local provider is working with us to make all the needed adjustments, so this will be a fully functional chair that will hold his equipment AND roll right into a newer van and strap right into the van as his car chair -when we can finally afford to look for a newer one, complete with a handicap ramp.

Gayla also brought us a bath chair - which is GREAT news since the insurance company denied us for one. I know you are all surprised about that one. We cannot wait to try it!

Last weekend we took Braden into his own baby pool - he really enjoyed it, once he finally relaxed, he really got relaxed enough to fall asleep and even snore in the pool!

Braden's daycare, Kidz Korner is having daycamp, and he even gets to spend a little time with the kids in their main play area! The kids were so excited, because he normally spends the day in the baby room. And Braden took a really good nap after watching TV in the playroom and hanging out with the kids.

This week we prepare for our long trip home, we will be on the road for two weeks and two days visiting family all over Missouri and Kansas. We hope to update during our trip, if we are able.

Hope your summer is going well!
The Wilsons

Making Front Page News

2009-06-08T09:23:00.003-05:00

Here is the story from the front page of the local paper this morning!! YAY for awareness and change is coming!!!!
http://www.2theadvocate.com/news/47170532.html?showAll=y&c=y

Hurricane plan involves special-needs children

Parents argue with state over shelters, hospitals

BILL FEIG
From left, Brad Wilson, his 3-year-old son Braden, and his wife Kodi sit in Braden’s bedroom, surrounded by the medical machines and devices that must be powered for Braden to live. The Baton Rouge couple had problems during Hurricane Gustav last year in getting help with their special-needs child.

STORY BY STEVEN WARD
PUBLISHED JUNE 8, 2009

The state Department of Health and Hospitals has implemented a new plan to address the needs of children dependent on medical technology in case of a loss of power during hurricane season, department Secretary Alan Levine said.

The new plan is a response to problems some families had during Hurricane Gustav in accessing medical help for their toddlers who use ventilators to breathe.
“I can tell you this. I have the phone number of every hospital CEO in the state in my Blackberry. I will do whatever it takes to make sure a technology-dependent child is taken care of,” Levine said.

Two Baton Rouge families had problems finding a place for their special-needs children during Gustav, leading them to lobby the state for a special medical needs shelter or a designated hospital.

Joe and Bridget Wallace had problems in August finding a place to bring their then-15-month-old son, William, in the days leading up to Gustav’s strike on Baton Rouge.

William Wallace cannot breathe without a ventilator and has gone though numerous surgeries, suffers from cerebral palsy and bronchial pulmonary disease, has a full tracheotomy, suffered brain hemorrhages and seizures, and is nourished through a feeding tube, his parents said.

Kodi and Brad Wilson, employees of LSU, said their then-2-year-old son, Braden, suffers from Leigh’s disease, a rare neurometabolic disorder that affects the central nervous system.

At the time of Gustav, Braden couldn’t survive without oxygen and air conditioning, his mother said.

In the days leading up to Gustav and right after, Kodi Wilson said, she had to resuscitate her son six times because he stopped breathing. (Parents note - it was actually SIXTEEN TIMES that we did this!!)

Four days after Gustav, Braden had to have a tracheotomy and was put on a ventilator to breathe.

Like the Wallaces, there were no special-needs shelters or hospitals that would take the Wilsons’ son before he was eventually admitted to a local hospital.

Kodi Wilson said she was so upset, she put together a petition with more than 40 signatures and wrote a letter to the state’s first lady, Supriya Jindal, asking for the state to assist all special-needs children and their families during emergencies.
Kodi Wilson said she never received a response.

Melissa Sellers, Gov. Bobby Jindal’s press secretary, said she checked with the first lady’s staff and they did not have the letter or petition.

In a written statement e-mailed to The Advocate, Sellers wrote, “DHH Secretary Alan Levine has worked to develop an improved plan for this hurricane season that will provide needed care for families with special-needs children. “Our absolute top priority during a hurricane is the safety and well-being of all Louisianians, especially those who have special health needs.”

Levine said every family with a technology-dependent child should have its own emergency plan in place in case power is lost. The Wilsons and Wallaces said their families now have generators — purchased at a cost of thousands of dollars. The Wilsons purchased their generator with the help of their church.

If a family receives assistance from a home health agency, that agency is required to have an emergency plan filed with the parish office of emergency preparedness as well as DHH, Levine said.

If those plans fail, families should call 211, Levine said. Operators
will transfer those calls directly to a state triage team of nurses,
hospital officials and home health agency workers.

The triage team will be set up at the state’s emergency operation center, the same place Levine and Gov. Jindal will be during a hurricane or other state emergency.
Once the triage team assesses the needs of the child, state officials will act, whether it’s getting certain supplies to the child or transporting the child to a hospital.

Unlike last year, Levine said, there are participating hospitals across the state that are part of this new emergency plan.

Levine said he does not want to name the hospitals before the emergency because state officials don’t want the families to all show up at one particular hospital.
“That could create a capacity problem. We want to do this in an organized manner and give the new system a chance to work,” Levine said.

Joe Wallace, a registered nurse, and Kodi Wilson said they wish the state would set up a special shelter where families could go just to “plug in” power cords to medical equipment for their children.

Levine said the state decided against a specific special-needs shelter.
“Too many things can go wrong at a shelter,” he said. “Many of the children would do better in a hospital.”

Levine also said the state is finalizing plans to work with private vendors to open pediatric day-care facilities for special-needs children. He said the plan is to have those facilities open by the start of next hurricane season.
But it may be too late for the Wilson family.

After what they went through last year, Kodi Wilson said, her family will probably leave Louisiana at some point.

“We don’t have other family here. We’re from Kansas. We just felt alone. We are not asking for a handout, just some help,” Kodi Wilson said.

Single Dad this week

2009-05-31T13:05:00.003-05:00

Well, Daddy is the hero around the house this weekend. Braden's pulse-ox machine went down again, but much more major than recent issues. We have the new one on order... but as our luck would have it, it is on back order, so we are trying to make this one work as long as possible. After last night's malfunction, we met the old provider at the office for a back-up to keep until Braden's new one finally comes in. At least we will breathe a little easier while mommy heads off for a short conference this week in Raleigh, NC.

We hope to put Braden in a baby pool tonight so he too can enjoy some of the warm weather and get to enjoy one of his favorite relaxing things to do - floating in the pool.

Braden got to hang out in the living room with us for awhile yesterday, and then he showed us how much of a big boy he is and can relax watching TV all by himself.

We have lots of doctor's appointments to make this month since we are now three - it's time to check in with everyone. Plus our new trach tube is in, and we have to do that in the office. It's the one that's supposed to help with all the secretions, but might also take away Braden's ability to "hum" or "talk"... so we will have some new challenges too.

We hope your summer is beginning well. We are preparing for a long trip home at the end of the month. Thanks for checking in on us.

Braden, mommy & daddy

Braden "talking"

The little buddies

2009-05-20T20:43:00.006-05:00

Braden looking at the lights above his bed...

Tickle fight!!!

Are you boys riding a roller coaster and screaming??? :-)

So it's been a crazy week around here... but finally getting to post. These pictures are Braden with his namesake, our godson Brandon. These two characters already have such a connection - notice the EXACT SAME expression in the one photo. Then the other one looks like he's tickling Brandon and making him laugh.

Braden made his debut turning three with his first three-year-old fit (he even kicked mommy!!)... here is a link to the youtube video:
http://www.youtube.com/watch?v=06Ql3QvuBC4

We've had some major drama with his pulse-ox lately that we are trying to sort out. Rest assured, our personal Braden-angel Staci has a new one on it's way and soon all will be right with his equipment once again. Pulmonary Care Specialists, Inc. is our personal little wish-granter right here on earth - they are truly FANTASTIC!! Anyone who needs affordable pedia-sure and affordable equipment because your insurance company is as ridiculous as ours is... please write me and I will send their contact info. She can ship anywhere!! So even if you are not here in LA... and need a better provider - I will send her info.

Hope you are all well... mommy got some bad and good news. Good news is no surgery, but the bad news is yet another disk has torn and another new one is bulging, creating a lot of pain... we are hoping a few weeks of PT will get her back on track and avoid injections and epidurals and such. Extra prayers are appreciated.

Daddy is busy at work as usual, but finding lots of time for Braden and helping mommy more too.

Check back soon...
Braden, Mommy & Daddy

Happy Mother's Day

2009-05-10T22:02:00.004-05:00

Well, we spent Mother's Day with our friends the Heckerts who hosted a Mother's Day crawfish boil. It was nice to spend time with friends and just relax!

It's been a rough week with mommy's back having lots of problems again, so much pain even prevented her from changing Bubba's diaper:-( Mommy's back has been getting better VERY slowly with the help of oral steroids and pain meds. She had and MRI this past week, and we hope to have a plan of action for full recovery later this week.

Daddy has been busy playing with some new technology. He made a neat slideshow (online scrapbook) with the photos from Baby Bee's birthday party. Here is the link for you to enjoy:
http://www.youtube.com/watch?v=s9kW6nSmNnc&feature=related

Then he found a way to create a collage of Braden videos. Here is the link to the one he did for Mother's Day, which was Braden's first days... he was so tiny!!
http://www.youtube.com/watch?v=Ne31iQ1oEcw

I hope you all had a wonderful weekend, tell you moms how much you love them - they never get tired of hearing it:-) I included a pic of a poem-type thing about special needs parents that was sent to me, and thought it was appropriate to share with all of you.

Thanks for checking in on us,
The Wilson's

Birthday Bash Recap

2009-04-27T19:41:00.005-05:00

Nana Debby & Nicole say hello to Braden at his party...

Braden gets a taste of his birthday cupcakes

Braden holds on to his epilepsy balloon

Jackson sports his visor and bumblebee pin

Bumblebee cupcakes

Well this weekend was a lot of fun. Mommy's best friend from college flew in for Braden's birthday, and so did Nana and Grandpa Wilson!! Saturday was filled with lots of fun and celebration at the Seize the Day Walk for Epilepsy and a celebration of our special little boy's THIRD BIRTHDAY!!

We took out Baby Bee's team dressed in bumblebee visors and wearing bumblebee pins as we took our "fun walk". Then it was to the race tent city with free drinks and jambalaya, recognition of all who walked with epilepsy, and a memory balloon release for a recent epilepsy family loss. Then it was off to Mike the Tiger's habitat for some bbq, bumblebee cupcakes, and fellowship and friendship. We were joined by MANY friends, including the only other local family we know with a child with Leigh's... six-year-old survivor Julianna and her baby brother Stephen and parents Stephanie & Glen. Mommy and daddy were so busy socializing - I think they forgot to take pictures at the actual birthday party! Oops. But daddy did put together a great montage from the walk and the day on youtube... the link is: http://www.youtube.com/watch?v=s9kW6nSmNnc&feature=email

THANK YOU to everyone who came out to support Braden, who sent cards or gifts or medical fund donations - we so appreciate everything you do for us!!

One last thing... I think we've decided that from now on we will ALSO be celebrating half birthday's, since we don't know just how many more God will choose to bless us with. So we might actually be starting an annual fundraiser just for Braden around that time in late October.

Enjoy the pics from the birthday bash... please take note that little Jackson didn't pull his hat off just for Braden!

Braden, Kodi, & Brad

Big day tomorrow...Saturday 4/25

2009-04-24T17:12:00.003-05:00

Our guests are here and we are getting ready for a day of walking, celebrating, and enjoying being around our boy. Check back for pics and commentary from the big weekend. Thank you to those that are supporting us with the walk and each and everyday.

BRADLEY

All's well...

2009-04-20T16:39:00.003-05:00

Thank you to everyone that has sent emails and text messages about checking in our boy. The docs were all smiles after his procedure.

Kodi hasn't been able to post because she is having "technical difficulty" aka her lap top went to heaven and she erased her account on here in the process. Any way, we'll get her back up and running in no time.

We are getting ready for the big weekend. B's party, the walk, nana/papa in town, auntie nic in town, and perhaps during all this we will find time to rest.

We will have plenty to share next week.

BRADLEY

Headed in for small surgery in the am

2009-04-07T21:35:00.002-05:00

We are just asking for extra prayers for the bronchoscope tomorrow morning. It should be routine, but you know our Braden. Anethesia has not always been our friend, and it's not good for Leigh's patients either. And there is a slight possibility we will have problems with the mediport again.

Just send up your prayers on his behalf, we thank you and will update you tomorrow afternoon as soon as we are able.

Brad, Kodi & Braden

Busy Time - Healing Fine - SIGN UP

2009-03-19T10:57:00.005-05:00

So we found out Braden had THREE different tracheal infections that we are continuing to treat with inhaled meds and added an oral (okay, really g-tube) antibiotic too. But we THANK YOU, GOD for being so good, and letting us keep him OUT of the hospital this time around. Braden is pretty normal for not feeling well, just a little more sleepy than usual, and a little more touchy about being "handled"... otherwise I don't think we'd even know. We go for our bronchial scope the second week in April, so we will know a lot more about this new kind of trach tube and if Braden has any granulation tissue around the stoma which could be the culprit of infection. We will post a reminder, as we will need LOTS of prayers going in, as he will have to be sedated, and as if we don't have enough to worry about, we are having a lot of problems with his medi-port. This could mean an additional surgery and multiple needle sticks:-(

Some good news, Braden's Great-grandpa James got to go home after a bout of intestinal issues.
Also, our Godson Brandon Jermaine (named in honor of Braden) was born last week and is healthy and happy at home - we will try to get some pics to post soon... and Braden had another cousin born on St. Patty's Day - Ethan Roger, also healthy and gets to go home today.

So we are getting ready for Braden's birthday next month, hosted at the Seize the Day Walk for Epilepsy of LA. If you'd like to support his team or join TEAM BRADEN WILSON, you can log on at: http://www.epilepsylouisiana.org and click on "start a team", "Agree" to the terms, and then click "Join a team" and select "Braden Wilson" in the pull-down menu. We will be doing the 1K fun walk at 8:30 that morning, joining the whole group for awards and some food and snowcones while the band plays - who I have been told will be singing Happy Birthday especially for Braden. Then we will head over to the Mike the Tiger habitat for some catered VooDoo BBQ, desserts, and treats - the kids will love the Tiger cage - it's a HUGE habitat!

Thanks for the continued prayers... mommy is in shoulder re-hab (yay, no surgery) and will be headed to her national advisory board meeting and then the national convention next week, leaving daddy to play "single father". As soon as mommy gets home, daddy is off to his national convention (strangely, the exact same city mommy will be in the week prior!), leaving mommy to play "single parent". Pray for us to have the additional strength we will need to do it alone, and pray that Braden continues to heal well.

Our thanks and love,
Braden Wilson & his parents!

Scary moment, but all is OK

2009-03-11T10:34:00.005-05:00

Braden is not always a fan of his sponge bath with daddy - as you can see in the pics.

Since Braden has been staying so healthy, I guess it was time for him to remind us who wears the pants in the family. He decided to give us a little scare that would bring us back to OLOL, but this time it was just the medical center side to see his doctor and get labs done. We had seen a little bit of blood in his sputum (fancy word for saliva, also referred to as "return" - the stuff that we get in his suction tubing "return") this past Friday, but didn't think much of it since occasionally this happens when you suction a lot. We thought maybe he just bit his tongue like he has in the past, but it went away and we didn't think much of it after that.

Sunday is trach change day, and while we saw a little more blood in his suction tubing, again, it was so minute, we didn't give it much attention. When we arrived at the daycare (mommy and daddy together since the truck had to go in the shop), he was drooling and spitting bubbles like usual, but it had some blood in it, like when he had bitten his tongue before. We decided to suction so we could get a better look at where it was coming from, and got a significant amount of blood return when cleaning out his mouth, and to our surprise it was in his nose too. Then he coughed and it was coming out of his trach too!

We called the doctor who could see us after lunch. We hoped it would slow down so we wouldn't have to make a trip to the ER, but blood/saliva mix was about half and half so we weren't in total panic mode just yet, just mid-level panic:-) We decided to give him a 3% saline nebulizer treatment, with the rationale that salt-water helps heal open wounds... and it seemed to work because the rest of the day, and by the time we saw the doctor and took labs, his bleeding had subsided - PRAISE GOD!!

But our trip to the pulmonologist opened up new avenues to explore, and Braden was coming up on being due for a regular bronchoscope (trach patients have them regularly to monitor the site and any changes in size for children to accomodate new trach tube sizing for growth). They have moved our timeline up to see what's going on. Our conclusion without a scope to say for sure is that he most likely has an infection just below the stoma site, internally, and perhaps some tissue growth due to infection. Sunday is trach-tube-change-day, and while we didn't get any blood return until Monday, it's possible the change aggravated the site and then moving him from the house to the car to the daycare just made it bleed. Since he's on so much air forced through him, the air probably forced some blood from the stoma site, up into the mouth and nasal cavities, therefore creating the scene we experienced.

We also discussed fitting him for a newer style of trach tube that has an inflatable cuff that will help promote some involuntary swallowing, and hopefully helping to reduce some of his secretions... we do go through about 3 bibs a day!

So for now we are on some inhaled steroids to help this probable infection, but we really haven't seen much more bleeding, so the anxiety level in the Wilson household has gone from HIGH, back down to a near-normal, with closer attention to that issue for the time being.

LaTacia (Braden's daycare owner) graciously agreed to babysit Braden this past weekend so mommy and daddy could attend the Sig Ep Alumni & Parent cocktail party & silent auction event, that mommy helped start five years ago. Mommy organized the silent auction for the first two years, and have missed the past 2 with a sick kiddo, so it was nice to see all the parents who started out with their kids as freshman, who are now in their last year with graduating sons. Daddy go the chance to do something fun with the fraternity, and... it was the first DATE NIGHT since last year when LaTacia (to the rescue again!!) took Braden overnight when mommy and daddy took a work trip to Disney.

Thanks to LaTacia and our old friends we ran into at OLOL for providing excellent care for Braden and his parents once again. Best wishes to one of Braden's caregivers, Ebony, who is on her way to give birth to Brandon Jermaine who mommy and daddy will have the honor of playing Godparents to!

Thanks for checking in,
Braden, Brad & Kodi Wilson

Updates and transitions

2009-02-22T20:30:00.003-06:00

So as we celebrate Mardi Gras this weekend, it's been a busy week for us to catch you up on. Since Braden is turning 3 soon, we transition out of our Early Steps program soon, which has been providing us with four home therapy sessions a month, and weekly speech therapy at the daycare. We first got to meet with two women from Capital Area Human Services, who provides some kinds of assistance and respite help for families like ours. Most families have to go through re-certification every six months to a year to keep your child in need on the list. Graciously, they have granted Braden lifetime status, which means we will not have to go through the recertification process ever again! Secondly, they said they were so inspired after meeting Braden and I, that they will try to put Braden at the top of the list the next time an emergency respite waiver comes open - this means if we get put on the list, we could finally get some help for respite care!

We then met with seven members of the EBR school board evaluation committee which helps determine what sort of schooling Braden will receive for the next few years before entering an actual school, and what sorts of things to work on with Braden development-wise. They were all very nice and seemed to really look at how Braden can best be served to possibly transition to school one day.

We then had a nail-biting appointment to get his mediport flushed, as two weeks ago after four sticks, it would not flush. So all our hopes were pegged on being able to flush the port this past week, or we would have to face some drastic measures in the near future and possible surgery to put in a new port. With a lot of prayer and fancy positioning of Braden, it worked! Of course, not without incident, he managed to get some subcutaneous swelling of the tissue around the port when he moved around as the saline was being flushed in. Next time we have decided to use a needle that's a little too big, so there's less chance of it accidentally backing it out.

Then mommy got a surprise when she felt a sharp pain trying to lift the not-so-little nearly 35-lb Braden out of his carseat in her shoulder. She thought it felt like it did when she tore her rotater cuff in '97, but the doc she saw doesn't think that's the case this time around. Seven x-rays and 2 injections still didn't produce any answers, so this week we will see if an MRI is necessary to find solutions. Daddy had to move Braden's car seat to the outside position so mommy doesn't have so far to pull him out of the car, which we hope will relieve some of the pressure on the shoulder in trying to get him out of the car.

And meanwhile, mommy and her friend Doris are working on the beginnings of a company they have named "Baby Bee Boutique" - which will sell baby/toddler blankets, burp cloths, decorative valances for windows and cribs... and will also be offering photography services and products too. So be looking for links to these excited products soon!

Lastly, we have received news that the last of the DNA tests, and the form of Leigh's Braden has does NOT have any genetic mutations at all. This is good news for mommy and daddy in order to make informed decisions about future family plans.

Thanks for the continued prayers. Braden's health has remained primarily good through what medical professionals have deemed a very difficult respiratory season, so we appreciate you keeping our son in your prayers. We believe he is suffering from increased seizure activity, and so we are headed back to rounds of neuro specialists again in the coming weeks.

Thanks for checking on us and finding the latest things to pray for specifically in Braden's care. We continue to thank you our friends, family, and silent supporters for your love.

Kodi, Brad & Braden Wilson

Happy Valentine's Day 2009!

2009-02-12T11:22:00.004-06:00

I thought I would take this opportunity to share with you all the things that Braden is now doing, since he has come home on the ventilator and on the vitamin cocktail.

First, he is a LOT more alert throughout the day. In fact, if he is stimulated, he is awake for a good part of the day. (He used to sleep a lot, usually about 50 minutes each hour... and now he is awake anywhere from 20 - 35 minutes an hour, so you can see how much better he is doing). He absolutely loves his light canopy and froggie friends in the crib - he is just fascinated. He loves to take walks and enjoys watching the scenery, same goes for car rides. While he may protest the actual MOVE from on location to another, he certainly enjoys the journey. Maybe that's a lesson for all of us... most of us don't truly relish change, but we can take the time to at least enjoy the scenery from point a to point b!

Second, he's finding his voice again. He has figured out how to cry through the vent, and he takes every opportunity to do so to express his unhappiness or displeasure with particular situations - mainly getting his shirt/jacket on & off. His cry is so sad and pathetic, he really knows how to play to your sympathetic side. He will also jerk that head back and forth in protest of the suctioning... he is not a fan at all. He will also express happiness, just not as loudly and pointed as the crying... he will sing-song a little when he sighs happiness. And on rare occasions, he will even look at you or in the eye when he's doing it!

Lastly, his latest "play" with his caregivers is to kick his legs wildly while changing a diaper. While most of the time, changing his wet diaper like this just makes us laugh at his display of two-year-old attitude, trying to do the same with a dirty diaper is not as fun and can be challenging at best.

He has gotten so big - nearly 35 pounds now, and wearing a size FOUR!! The kid isn't even 3 yet... yikes!! Pants are slightly long because he's always pulling his legs up like a frog, but he is definitely a size 4. I've already had to put away all of his size 3's.

Happy Valentine's day... it's your chance to tell those that are important to you that you love them. Don't be shy, you may never get the chance if you don't do it now. Spread the love.

We love you guys for checking in on us!!
Braden, Brad & Kodi Wilson

Heart Day is on it's way

2009-02-03T11:21:00.003-06:00

Our little friend JazMyn just couldn't wait to give Braden his valentine's gift - the one she picked out just for him... so we already exchanged our little tokens of love. The new kissie frog resides atop Braden's crib, at the end, so the new frog doesn't crowd the old ones. But here are pictures from the day she gave him the frog - as you can see, it's HUGE, and is the size of Braden even!! We love you Jaz, and the entire Breaux family... you will always be special valentine's to us!!

So start shopping now if you haven't, even the kids can't wait! :-)
Love,
The Wilson's

New Year, New Us?

2009-01-22T20:56:00.005-06:00

We have been blessed to have been recipients of a visit from Brad's aunt and uncle Jeannie and Jerry from Pensacola. They were in New Orleans seeing family and a show, and they came to see us and even made dinner for us! Braden got his very own ugly doll just like the youngest Obama girl took to school her first day, and of course, Braden got LOTS and lots of snuggles from aunt Jeannie!!

This year we are pledging to make some changes. We have made a decision to start taking care of ourselves as parents. For so long, everything in our life has revolved around emergencies and anxiety and fixing things... so this year we are hoping to make some positive change. Our lives will still be on a rollercoaster, but we will try not to grip so tightly. Kodi is calling 2009 "The year of the mommy", because after years of advice from other moms, it finally sunk in that I can't take care of my family if I am falling to pieces. So we make a pledge to renewed health... back to the dentist... (Kodi hadn't been in 10 years - I know, I deserve what I have coming - but a lifetime of mouth metal left me with a feeling of needing a break!)... new plans of working out... plans of finding a babysitter for some respite care and date nights...plans to organize a 10-year anniversary trip for mommy and daddy next summer... and plans to live our lives without always waiting for the next emergency anxiety - we are giving that to God.

We are connecting with other Leigh's families, so this year we will have some stories and new friends to share with you.

Our friend JazMyn continues to keep us very entertained, and if you get a chance, you should check out her latest adventure dancing to Beyonce's video "Single Ladies". She is such an inspiration... when you see her dance around (and VERY well) - to think that two years ago she wasn't yet walking or talking, you realize that God gives us miracles every day, and we are blessed to have this living miracle in our lives! She is such a JOY!! Here is the link:
http://www.youtube.com/watch?v=5tV8wbFnvuw

Thanks so much for the continued prayers... Braden is in EXCELLENT health!! We hope to have many wonderful things to share with you in 2009.

Brad, Kodi, and Braden

Back with a sleigh full of presents from KS

2009-01-06T09:27:00.007-06:00

Well, spending such wonderful quality time with the family was so great this trip. While Braden wasn't up for much moving around, we still managed to see many family and friends. For the most part, Braden did extremely well, but did give us some long sleepless nights throughout. Mommy and daddy fought the "crud" everyone seemed to be passing around and even got a touch of the flu. Vacation should be more relaxing and should involve more times of feeling good, don't you think? We know all too well life isn't fair. Braden is very happy to be home, and seems to be enjoying his light canopy more than ever!

The pics are of our family time together - I will try to label them if I can figure it out!

First, let us give praise and thanks to God for allowing us safe travel without too many "major" incidents. His angels were flying with us along the road, and we felt His protection while on our journey.

Second, a great big THANK YOU to Braden's AUNT, Jenny Betschart and her mother for organizing the Soup Supper fundraiser for Braden's Medical Fund!! The Knights of Columbus were so generous to support us, Aunt Shala's company donations from National Beef were a huge help, not to mention the gift baskets from LA Fish Fry and Bruce Foods. WE THANK YOU for sending money to support this effort, for giving of your personal time, and for showing up to donate your support and money to help us pay off Braden's medical bills that only seem to grow! A very special thank you to Ryan O'Neill, who not only showed his support by coming to the dinner with his family (our long-time family friends), he wanted to something extra to help and hosted his very own "Push-Up-A-Thon" and did over 1200 push-ups for Braden! WOW!! We were blown away by this personal contribution of sweat to help our sweet boy (who has never met Ryan!). We truly appreciate what you did, you are an amazing young man - Thanks for blessing us!!

The gifts and piles of gifts - thanks to all family and friends for the thoughtful gestures and all the wonderful christmas cards we've received. We are so very blessed by your friendships and love, and the support you have provided us during this tough year. We hope that 2009 brings all of you many blessings.

Brad, Kodi, & Braden Wilson

Made it to KS... long trip but we are OK

2008-12-21T14:28:00.003-06:00

Well, a normally 12 - 14 hour trip to KS turned into a 16-hour trip. We "thought" we had planned for everything, but when you are turning your vehicle into a moving PICU unit, it's tough to anticipate all that can go wrong. Mainly none of our converters would allow us to use the heated humidifier Braden needs to be on, so after we turned north enough into cooler weather, we had to stop every 2 hours to put HOT water in his chamber. Then the chamber cracked and wouldn't hold all the water. Of all the hundreds of extra pieces of med equipment we brought extras of, of course, the water chamber was practically the ONLY extra we did not bring. Thanks to our friend Stacey at Pulmonary Care Specialists Inc in LA, she called around 6 different places in Wichita for Nana Debby to run and get the chamber for Braden to have upon arrival. Great teamwork!

So after a very LONG trip, we've settled in at Nana and Grandpa Wilson's. Church at our home church in Wichita this morning was great - we got to see the children's program and catch up with old friends. We've gotten to spend time with new cousin Tristen and new cousin Kohen - Braden doesn't seem bothered at all by the littler babies around.

We wish you all a very Merry Christmas as we wait for the rest of the Wilson clan to make their way from Denver, and then we will be off to Ashland to see mommy's side of the family the day after Christmas for a week in the Dodge City area. Love each other, appreciate one another, and share your joys together for a bright and beautiful 2009!!

Brad, Kodi, & Braden Wilson

First big SNEAUX in over 50 years

2008-12-12T23:06:00.004-06:00

It has snowed here in Baton Rouge on Thursday. I joked with some friends that Hell had frozen over, as it snowed in New Orleans too:-) It was the first snow like this in 20 years, and they say the most accumulation in over 50 years. It was big, fat, pretty lake-effect fluffy snow. The first picture of our tree was taken at 6:45 am. The next two were taken at 8:00 am. What a beautiful morning.

Even our beloved mascot at LSU, Mike the Tiger got to enjoy the snow for the first time... he seemed to be enjoying himself, as you can see.

It has caused quite some trouble with power... it was like rolling black-outs all over the city, and some were still out until this evening. You have to remember how weak the trees were from Gustav, and then to have heavy, wet snow weigh tree limbs and power lines down, it was a recipe for some disaster. The daycare had to shut down because they lost power, and we even lost power at the house too. Just as we were trying to make plans for where we should take Braden for an overnight in a warm place... the power came back on after 3 hours of being "dark".

We were glad that MOST of the city was shut down (but of course, not LSU, they couldn't possibly reschedule finals...) as most folks have NO IDEA how to drive on ice or snow, and why would they? Our interstate over the Mississippi was shut down both ways due to icing they couldn't clear (we don't have any salt trucks waiting around for this kind of thing, and I'm not sure they've ever seen a snow shovel), and another major highway to the airport shut down because over 10 wrecks on a 12 mile stretch brought things to a screeching halt.

Tomorrow is the big fund raiser for Braden's Medical Fund in Ashland, KS. Please pray for a good turn-out and generous pocket books! Thanks for everyone's continuous support, love, and prayers.
Brad, Kodi, & Braden

Lessons from Paxton (and Jesus) about life and death

2008-12-09T10:10:00.006-06:00

I thought I would share with you something that Braden's Aunt Shala shared with me a few weeks ago. She was faced with how to tell her five-year-old about Braden's diagnosis, his condition, and what that might mean for his future. I'm sure there have been times when many of you as parents faced that same struggle, about how to teach your kids about life & death, and then when will the time be right. I wanted to share with you her story, as I think it might help others out there facing this difficult decision.

Once we had our diagnosis in late October, Shala decided to tell Paxton the truth about what was happening with Braden. With her permission, I am sharing their conversation. Here are her words as she sent them to me, when I inquired about what transpired between them: "Sigh… this is hard……this was a conversation that I was not wanting to have but… knew I had too. We were laying in bed and she was laying there telling me about her favorite part of the weekend. I thought… there is no good time to talk to her about Braden but why we are here and have an unlimited amount of time, I’m going to take a deep breath and go for it.

I started talking about how sick Braden has been. I told her that he has new machines now and they are helping him breath. She asked if she could see the new machines and I told her yes and we went to look at the photos again on the blog. She then said…. “momma, is it time for Braden to go to heaven and be with Grannie Cack?” ( I didn’t even get a chance to talk about the outcome.. she figured it out) Of course I started crying at this point. I said, not yet honey. He is and has been really sick so we don’t know how much longer we will have with him. She cried and said she wants to hold him for a LONG LONG LONG LONG LONG LONG time. She also asked if she could go to the funeral and let Aunt Kodi cry with her…… tear………… She wanted to know if she could give her favorite bear toy to him. She offered to send all her toys actually. She thought they would make him better.

She wanted to know if Grannie Cack would take care of Braden and I told her that she would. She asked if God would take care of Braden and of course I said yes. She told me that Grannie Cack will rock him to sleep every night so I shouldn’t worry about him. Plus- Haley and Sammy (her cats) are in heaven so Braden will have her kitty’s to play with. She also said- she was informing me that when Braden went to heaven, we could not see him anymore but he will always be in our hearts, our pictures and our memories. This coming from a 5 year old…..

She is sad. She said, “ I love my best friend and cousin Braden though.” …… tear…… I didn’t really stop crying last night. She didn’t either. She was laying in my arms and we said a prayer for Braden and she was still crying and then fell asleep. I laid with her for a long time."

I was blown away by the profound AWARENESS children have of the true situation at hand. Don't discount their feelings and awareness of the situation and think it might be too big for them to grasp - they will surprise you. We are so blessed to have a wonderful and loving cousin for Braden to look out for him in every way!

We sometimes wonder why this is happening to such a sweet little boy, and this time of year we are reminded that God gave His only son so that WE might live. What a sacrifice. Not that we compare Braden to Jesus, but I wonder what my son will give others in his time on earth. In talking to other moms who are blessed with healthy children and friends with relatively "normal lives", here is what I HOPE Braden will give your families:

* An appreciation for each other while you are blessed to have one another. We are reminded many times we are not guaranteed a certain number of days on this earth. Hug your children every day, and tell those you care about you love them, EVERY DAY.

* Appreciation that your families can express your love for one another. We will never hear "momma" or "daddy" or those simple words "I love you". When your child won't quiet down, be thankful they have a voice to express themselves.

* Appreciation for every little accomplishment in your child's life, so many will never reach "normal" milestones. When you are tired of driving them from this practice to that rehearsal, be thankful they are able-bodied to be able to enjoy things they love to do. When you tire of playing with them, be thankful they are able to communicate and connect with you in play.

* Appreciation for your health, your children's health, your family's health - may you never take something so seemingly simple for granted.

* An appreciation for "diversity" and diversity awareness. We are lucky to practice perfect and unselfish love every day for a child the world may see as "less than perfect". But we have been chosen to care for one of "God's favorites", a responsibility we do not take lightly. I know what it's like to look at a family like ours and think, "Thank God that's not us"... but you never know what the future holds. We feel blessed every day, and know that if you are ever in our shoes, you would feel the same, eventually.

So friends, we hope you have a wonderful and blessed season with your families. Don't forget the REAL "reason for the season" John 3:16. Thanks for sharing our lives with us, we are abundantly blessed by all of you every day.

Kodi, Brad, & Braden

95th Percentile!!!!

2008-12-04T11:27:00.003-06:00

So we have a few updates for you... some of you know that Braden was born at 21 1/2 inches long, putting him over the 90th percentile at birth. When he was 6 months and had to be care-flighted to Texas Children's, they had him on some medicines they said may stunt his growth for awhile, and they did. At one point we were merely in the 5th percentile for his age! Our most recent visit to the pulmonologist revealed Braden has caught up in his height (I told you he grew in the hospital!!) and is once again in the 95th percentile!!! That is music to our ears to know that he has a chance to thrive once again. He grew out of all his clothes by the time we got out of the hospital, and we had to go buy him new, bigger pants!

Braden's blood test came back that there were no DNA mutations in his blood. We don't know what this really means for the overall picture of Leigh's yet, but we do know it means another consult with the genetic specialist at TCH. We are still waiting on a second test done on his muscle to come back too.

Mommy wanted to get Braden some lights that change color... and I did find some at Wal-Mart that glow white and then to multi-color! They can all stay on together, or change from white to color in a variety of speeds. I created a "LIGHT CANOPY" for his bed... and he REALLY seems to be loving the lights!! I think we may keep them up all year for him. We have even hung a fiber-optic angel that changes colors too - so now in addition to the corner statue angels, the hanging fabric angel, and the angel sitting above his window from the local Angel Ministry... Braden is certainly being watched over:-)

We had some family pictures taken recently, so we will post some of those to share soon. While out doing Black Friday shopping with the masses, we found a second frog ornament we just HAD to have... we love them both - even though they are the only non-USA things on our tree:-)

Sister-In-Law Jenny Betschart has organized a soup supper benefit for Braden, and of course, lots of family members are pitching in to help. It's being hosted by the wonderful Knights of Columbus in Ashland, KS and Shala's company is pitching in to help advertise and provide provisions as well - THANKS NATIONAL BEEF!! It's being hosted December 13th, and we are just SO very grateful for the gesture that has me choked up just typing about it. The love we are shown can be overwhelming. We are just so blessed by family and friends God has put in our lives. We spent Thanksgiving giving thanks for so many supportive people in our life, and the love God shows us through ALL OF YOU!! Insurance companies may never cover a "life" policy on our son, but we are so grateful that so many people care enough to help us find a way to plan for future expenses. We can never thank everyone personally who deserves it for helping us.

We are just looking forward to a wonderful trip home for the holidays to be with family, the doc says we look good enough to travel. We can't wait to see old friends, family, and NEW cousins!!! Will write more again soon!
The Wilson's

Tiny Dancer

2008-11-24T09:13:00.011-06:00

Braden seems to be finding more energy all the time to try new things. Some of them really crack us up... we feel kind of bad for laughing at our own kid sometimes, but it's a laughter of pure joy that he's picked up a new "trick" or met another milestone.

His newest protest to vest treatment is holding both arms up in the air like he's riding a Harley. Funny thing is that with the black vest on, he does kind of look like a motorcycle rider:-) This weekend daddy had put him on his right side to lay down. Braden kicked his way onto his tummy... over and over when we would place him on his side. He looked so uncomfortable, which is why we kept moving him back to start, but he would "dance" his way back to that position - it was so funny to see him show attitude and put himself right back where he wanted to be!

We had a busy weekend preparing for our friends the Heckerts to come stay with us Thanksgiving night, so mommy Kodi and mommy Doris can get up before the crack of dawn to hit those fabulous sales on Black Friday. Mommy laid about 120 square foot of new decking up in the attic to make room for Braden's old baby stuff and clothes he can no longer fit into, and toys and swings he is just too big for, so the guest room could actually hold guests:-)

We had some family pictures taken this weekend too... trying to get them all in while he is healthy and out of the hospital. We will post some in the coming weeks. Braden is a healthy and mostly happy boy these days, who even will open his eyes wide open a few times a day, an alertness we've not seen in him before since he was very small. It's exciting to see him develop and do new things. We thank God for every day we get to still be his parents.

Kodi, Brad, & Braden

Home Routine getting into swing

2008-11-12T19:29:00.004-06:00

So we didn't want to "jinx" our return to home, so sorry we've waited to post. Braden has not made the easiest transition. His past ability to adapt quickly seems to have diminished on some levels, but no explanation nor situation is ever simple. Mommy and Daddy have had to readjust their expectations from our bouncing baby boy who has always been so resilient. Progressive brain damage is something we are all learning to adjust to. We have had issues with the heated humidifier and the in-line humidifier that has taken him some time to adjust to. While we were wondering if we will ever be able to live outside the hospital again, Braden has turned the corner.

Last night and this morning, we have met the upgraded version of Braden, Braden 2.0. He is a spunky little mess who kicks his legs around like crazy (a new talent) when he is not content with position, hunger status, gas pain, vest therapy, etc. This new wiggle worm is harder to get dressed and change diapers on. It cracks us up to see him wiggle around like a "wild man". I will have to try to catch video of it.

He is wide-eyed the past 2 days, looking more alert than we've almost ever seen him. Maybe the energy he is getting from his "mito-cocktail" of vitamins is allowing him to find more energy to use:-) He has figured out how to move his left arm around with fervor and in all directions, and the right one he will stretch out to the side. These are all new post-trach developments.

We hope to have fun cutting hair this weekend, it's getting long on him again. Don't worry, the curls aren't going anywhere. Thanks for the patience as we try to readjust to life in the real world again.

The Wilson's

"He's My Son" - home this weekend?

2008-11-05T07:48:00.003-06:00

It looks like we might get to bring Braden home this weekend if all continues to go well with the vent. Braden seems well by all accounts, but he has lots of lactic acidosis that his body is not compensating for, and so it's not looking likely that we will get to take him off the ventilator for sprints like we were before. I don't think things look any worse, but he started doing some strange breathing patterns this week, and therefore, they have taken a closer look at his blood chemistry levels and based on past readings have come to this conclusion. While it's hard to hear, we know it's the right thing for Braden to keep him comfortable so that his body doesn't have to work so hard to overcome itself.

We are still waiting on more orders from the geneticist at Texas Children's to see what next. This disease 15 years ago was diagnosed once the patient passed and an autopsy was done... we are lucky to still have Braden here to help give us more answers! We will keep you posted on that too... but those tests take about 2 months to come back, so don't be in a hurry to get the answers.

As I was driving home the other day, I heard this song on the radio. While it brought tears to my eyes, I think it's beautiful, so I wanted to share. It's called "He's My Son" by Mark Schulz.

down on my knees again tonight
hoping this prayer will turn out right
See, there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night, as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

[chorus]
Can You hear me
Am I getting through tonight
Can You see him
Can You make him feel alright
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God, who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there

[chorus]
Can You hear me
Am I getting through tonight
Can You see him
Can You make him feel alright
If You can hear me
Let me take his place somehow
See he's not just anyone
Hes my son

Can You hear me
Can You see him
Please don't leave him
He's my son

The Wilson's (Braden, Kodi, and Brad)

Hospital Halloween

2008-11-01T19:04:00.009-05:00

So we had another holiday in the hospital, let's hope this will be our last for awhile. We took our little "lord" for a battery test on our new vent, the LTV 950. (We thought since the vent would make loud breathing sounds, that Darth Vader would be an appropriate costume for Braden - why not play up your assets?). The hospital had a little halloween parade, and our friend Millicent got to join us for her first time off the vent on an HME:-) Her mommy brought her two outfits for her first Halloween, she was dressed like a kitty cat for the parade, and then she got dressed in her Minnie Mouse costume.

We hosted a few trick or treaters at the hospital. JazMyn had come to the hospital Thursday with a special delivery for Braden - a big stuffed frog she had beat adults for at the state fair! She first won a parrot but convinced her parents she had to have the frog for Braden, so she played again to win the frog. We promised JazMyn if she came to trick or treat, we would let her push Braden around in his stroller in the hospital (for a second battery test on the vent t00). What a great surprise to see her come dressed as a beautiful bumble bee!! Little miss pushed Braden around for over half an hour - she was so proud she could be "in charge" of her little man for awhile. Braden's Darth Vader costume didn't seem to scare her one bit:-)

Our friend the Heckert's came by with little Jackson in his punk rocker outfit to see Braden too. He was happy to see his little friend as they shared a few moments together.

Thanks to our friends who have sent cards and e-mails of support, and thanks to friends Dianna, Courtney, Kelly, and Debby & Jim for giving us a reprieve from cafeteria food!! After more than two long months of living at OLOL, the menu has grown tiresome. It's not great food to begin with, so after such a long time, eating here can be a real drag and even a downer. So the little breaks our friends have given us have been a welcome change and blessing and a lift to our spirits too!

Today mommy and daddy did some extra training with the Respiratory Therapist on the new vent and some of our home equipment. Tomorrow our plan is to take Braden and a nurse outside to experience some of our beautiful weather and give the battery another, longer test. We will probably stay another week in the PICU on our own vent and own heated humidifier equipment just to be sure Braden's body is responding well. HE IS STILL OFF OXYGEN SUPPLEMENT ON THE VENT!!! We are so proud, and not surprised by our strong little hero. Given our diagnosis, we just want to take him home and love on him and make life as normal as possible. I think I might pull down all the Christmas stuff soon this year, and put up all the colored lights I can find for Braden to enjoy as long as possible. I wonder if I can find some Christmas lights that change colors...

Thanks for visiting.
Braden Wilson & Proud Parents Kodi & Brad

The Diagnosis - Leigh's Disease

2008-10-30T09:58:00.006-05:00

This might be the hardest post we've ever made. We knew this day might come where we may finally get an answer, but not all answers are the ones you want to hear. Braden has been diagnosed with either Leigh's Disease/Leigh's Syndrome or Leigh-Like Disease/Syndrome. It really doesn't matter, as the outlook and prognosis are the same. Braden has shown signs/symptoms since his birth, so his outlook means we are already on "borrowed time". (If anybody has any songs or poems you could send me about being on borrowed time, I'd love to have them). But ultimately, we are ALL on borrowed time. God is the only one in control, and we are not giving up hope, that God will bless our family with more time with Braden. I guess no matter how much time we get, it probably won't ever feel like enough.

Braden is such a fighter, so his fight may buy him more time with us. We have put him on the supplement regimen, what they call a "mito cocktail"... his will consist of CoQ10, thiamine, and carnatine for now. The supplements cannot cure his disease, but they can help make him more comfortable, and may help slow the progression of the disease. Braden also doesn't perfectly fit into all the things associated with the disease that are symptoms/markers/indicators... like "failure to thrive" is not in his vocabulary, as the double chin, puffy feet, dimples for knuckles, and the size of his wardrobe will all tell you.

We still believe everything happens for a reason, and this visit to OLOL is no exception. If our doctor had not wanted Braden to have this special ventilator, we wouldn't have been waiting around for an extra few weeks, and allowing us to come to the decision that since we had the time, and it had been a year since Braden's last MRI, that we should use the time to get a good look at his brain to see if there were any notable changes. And if the ventilator wouldn't have malfunctioned, we would never have gone back into the hospital, and Braden would not have been in such a worrisome condition which prompted a new MRI to compare it to the one before we left. Since both MRI's showed signs of progressive brain damage, we did an MRS (like an MRI, but looks at the cell function in the areas where there is damage) which confirmed the suspicions of our neurologist that what we have is Leigh's disease, and it IS progressing. We do know the area of the brain that is affected is related to his respiratory issues... and they say that these kids usually die due to respiratory or cardiac complications. The closest thing I can tell you about what we can expect is that he won't die of the disease, he will most likely suffer complications from respiratory failure or cardiac failure. In our case, it will probably be respiratory.

So where do we go from here? Well, we have a new ventilator (totally different brand), the LTV 950. Braden will be "resting" on the vent for several weeks as we transition him home into our regular routine before we can start trying to wean him off again. Want to hear some good news? Our little man has been on ROOM AIR with the vent for a whole day!! He is not requiring any oxygen support to maintain his sats in the 97-100 range! This means he is able to oxygenate on his own! :-) Our medical team will be doing what they can to get us home as soon as possible, so we don't spend any more time than necessary there.

THE BIG MEETING:
We did meet with Braden's entire care team: intensivist, pulmonary specialist, nursing manager, respiratory manager, social worker, vent/supply company, and the overseeing physician (who also happens to be our cardiologist). They were all extremely receptive to our concerns about what happened to us, how to make sure this won't happen again to us, and our suggestions on policies/procedures to implement to ensure better quality care for ALL patients who follow in our footsteps. They had already recognized one major breakdown in communication, and Tuesday had started what daddy and I are affectionately calling "Braden's Rule"... where the specialists, intensivists, social worker, child life, pharmacy, and respiratory all do rounds together at the same time (like a mini-family meeting) once a week for ALL vent-trach patients!! We were so pleased to see that they were already taking steps to ensure future family communications were more inclusive for all parties responsible for Braden's care (and the other kids too)!!!! We made some suggestions on transitioning from the hospital to home too that I think they will take to heart and try to implement for families going home on vents. They thanked us for taking the time and having the courage to confront all the issues with the entire team responsible for his care, and they thanked us for our candid comments and suggestions on how to make it better for EVERYONE. It made us feel like what happened to Braden was not all for nothing, they really do want to implement change where it's needed. They realized this need for change, because it could have ended differently if the parents were not as involved and astute to their child's needs like Brad and I are. It was a wake-up call, and they responded in a manner that makes us more comfortable about the future.

If you'd like to read more about the disease, here are some links:
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=narp
This one is the most comprehensive and the exact same 32 page print-out the neuro doc gave us, and a lot of it is doctor-speak that's over our head, but there is some really good info if you sort through it to the layman's portions:-)

http://www.ninds.nih.gov/disorders/leighsdisease/leighsdisease.htm
http://www.healthline.com/galecontent/leigh-syndrome
http://www.rareglobaldiseases.com/leighs_disease.php

Continue to pray for us. Braden needs strength and healing so he can come home. Mommy and Daddy will need strength, courage, patience, peace, and wisdom as we start making decisions about his care, and put together a plan for future parameters on how much support we will give our son to sustain his life, because technically the body can live forever on a ventilator. These are not easy decisions, and ones we probably won't share with everyone, as these are very personal decisions we have to make, and no matter what we decide, I am sure there will be opinions on both sides. I remember feeling gut-wrenched over the woman in Florida who's husband and mother did not agree, I would have never imagined that one day we could be in that situation too. We are praying for God's hand to guide us and let us carry out His will for our son. After all, my friend Stacey always reminds me that Braden does not belong to us, we were only asked to care for him here on earth for the amount of time decided by the Father. We will have to give him back someday, I pray that we have the strength for when the day will come.

We still have HOPE. Braden has already beaten the odds so many times it's almost unfathomable how much he is willing to fight to stay with us. We will keep HOPE that Braden being the anomaly that he is (because he still doesn't perfectly fit into Leigh's with all the symptoms), that he will once again prove the doctors wrong, and we will talk about our diagnosis for many years to come. Maybe we can be that 25% who lives longer than the current expectation.

Thanks for all your continued support, and for the prayers we know you will be sending up in the days ahead. We need them.
God's love and blessing to everyone!
The Wilson's (Braden, Kodi and Brad)

Braden's Song and more tests

2008-10-28T23:07:00.003-05:00

So we inch closer to a diagnosis, they do more tests and we had an MRS today (a spectroscopy MRI that looks closer at metabolic activity in the brain). And even should we get news we don't want, we will continue to pray for God's guidance, to give us wisdom to ensure we are carrying out His will for our little angel here on earth.

So while we wait for more answers, I thought I might post a little song I wrote for Braden after we came home from our trip to Texas Children's Hospital in Houston. It's not professional nor fancy, just a mom singing a tune for her precious child.

"Braden's Lullaby"

Braden, Braden how was your day?
I hope that you had fun today
Now that we've had bath and play
It's time to take a moment to pray

Father, thank you for this day
I thank you for my health today
Thank you for my mom and dad
Loving them makes me glad

Thanks for friends and family too
I know that they pray to you
Thanks for blessings big and small
Bless us one, and bless us all

Braden, Braden how was your day?
I hope that you had fun today

More updates we hope to share later this week after our big hospital "family meeting" and follow-up meetings with some of the hospital administration.

We plan on having a NEW VENT for Braden very soon, but the transition may take a few weeks. Ugh. So pray we get to take our little guy home in time for Thanksgiving... won't it be just the thing we are most thankful for?? :-)

The Wilson's

Ventilator malfunction and bad settings put us back at OLOL

2008-10-25T13:17:00.004-05:00

Friends and Family -
I'm not sure where to begin, as we only tasted four sweet days of freedom, and they weren't very "free" and they have come at a price. You know we are not medical professionals, and are limited to only knowing something is wrong with Braden when something becomes outward in it's manifestation, or his pulse-ox tells us he is not oxgenating like he is supposed to.

What I didn't tell you, was that when we put our ventilator on it's internal battery power, and we were loading Braden in the car to leave the hospital, it was not working properly, and we had to bag Braden for about 10 minutes before we discovered that his oxygen line was not turned on (however, the vent should still have worked properly, as Braden is NOT oxygen dependent). The ventilator seemed to not be working correctly, and just as we were about to give up and go back into the hospital (after about 20 minutes of alternate bagging and ventilation) the machine seemed to right itself and Braden seemed fine. Since we were told the machine had 2 hours of internal battery at max settings (and Braden is on minimal support settings), when the battery was flashing half full, we had to decide: back in the hospital or race home for power. We chose to race home, and once we got him plugged in and set up at home, he seemed to be just fine.

As Monday came, we discovered that the machine still would not function properly on internal power, but plugged into the lighter - all was fine. However in the coming days, as Braden would be transitioned from the home to the car, or the car to the daycare, or the daycare to the car, the machine would consistently not provide enough support for Braden - and we would end up in situations where we would have to support him with bagging until his machine would "catch up"... it seemed it had difficulties in the transition process.

Tuesday he seemed more sleepy than usual, but we thought it might be related to the incoming of the cold front, adjusting to our new routine at home, or possibly just catching up on some quality rest he couldn't get in the hospital. But when Wednesday came, and he was even more sleepy and unresponsive like a rag doll, we got a little worried. When that afternoon he began taking big deep recovery breaths twice a minute, we thought he needed help with a breathing treatment - and it did help for a few hours. But that night when the deep recovery breaths returned twice a minute and he was rag-dolly, we knew he needed help.

As soon as we had arrived in the ER, it wasn't two minutes in that transition that Braden started to drop his sats again and I had to yell for an ambu-bag to help him breathe, and they rushed us right back, and got us put on a hospital ventilator. After nearly 5 hours on the hospital vent, they decided to take a blood gas... and his CO2 levels were through the roof at 81 percent!! His chest x-ray was clear, probably the best one he's ever had, so we hope we won't have to be fighting a pneumonia too.

Since we are not medical professionals, we rely on them to care for Braden. In retrospect, mommy and daddy when reviewing his settings, it became obvious that this vent was not set for minimal life support should Braden suffer a neurological episode or become apnic. Daddy also discovered as we put a test lung on and tried to mimic Braden's breathing on the hospital vent, that Braden would actually have to FIGHT the vent to breathe over it, and he was on these settings for two weeks... our little man was probably fighting the ventilator for that long!

So here is the bad news... once his body gave up, the minimal settings were not enough to support his life (the whole purpose for the vent). We believe at one point he was put into a state of constant seizure - so they put him on an EEG and saw lots of seizure activity - but Braden has always shocked technicians who have never seen his EEG before. So they attempted to treat him to bring him out of this "status epilepticus", and he seemed to respond.

Yesterday we repeated and mri to compare it to the one we had 2 weeks ago, to see if he suffered any brain damage or swelling, and he has both. The swelling is nothing they are concerned about, as it occurred with the new damage, so now we are focused on the outcome of the new brain damage. He does not have NEW areas of brain damage, but the previous areas that were damaged by the suspected hypoxic event near birth have grown in size and have seemingly progressed. There is no definite as to what this will mean for Braden, or if it will have a profound, if any, effect on him.

Some hopeful portion of this story, is that Braden has seemed to make his way closer to his pre-ventilator-incident-state. They were not planning to sedate him for the mri, but as soon as they started making their way there, he started kicking about. And then he messed up the whole bed with a dirty diaper. They put him in the mri machine and he started kicking his legs again, and they tried to calm him by rocking him. That lasted about a minute. So they ended up sedating him for the mri - doesn't that sound like our regular, fighting-spirit, spunky Braden? To me, that's a good sign.

We will AT LEAST be forcing a family meeting with the pulmonologist who is ultimately in charge of the vent settings, the intensivist who sent us home on the wrong settings, a manager over respiratory therapists (because at some point they should have recognized the settings wouldn't be quite right if Braden needed full support of the vent), and additional hospital medical personnell. We will also make sure our DME RT (Durable Medical Equipment company's Respiratory Therapist) - they provide the ventilator - is also there, and if we can make it happen, a representative from the manufacturer as well. I've done enough crying for now about the situation, and now I am mad. Brad, bless my loving husband for not only having to go through this with me, but he also has to manage me and my angered opinions, so I don't make drama and Braden gets what he needs right now - he has been my rock once again.

Pray for us, we have really been through some difficult moments and hours these past days, and need all the support we can muster up. We know ultimately Braden is in God's hands, regardless of human error, and that His will shall be done. Pray he gives us the strength to cope with whatever the outcome may be.

Home Sweet Home at Last - 61 days at OLOL

2008-10-22T16:31:00.005-05:00

Finally we got to bring Braden home Saturday, for mommy's birthday! We spent 15 days in August with an 11 day hiatus at the end of August before going back for another 46-day stretch. If you've never stayed in an ICU unit, you just can't comprehend how exhausting it really is... all the beeping, the alerts, the lights always on, the patient care every 5 minutes for something new - being on "the floor" is a whole lot more waiting and downtime that you just don't get in the ICU. It wears you to complete exhuastion, even Braden was ready to get out and fussy to go home!

It will take a few weeks for us to adjust, and really to catch up on "good sleep" without all the constant commotion. We are all in transition and working out the hiccups in our routine. With nobody in LA ever having this ventilator, and the provider not familiar with it, and the salespeople telling you things it can do that it really can't... we have had lots of ups and downs with the nuances of the new ventilator. I already have TONS of feedback for improvements on a new model - think they'll pay me to be a "patient consultant?" Probably not, but one can always hope.

Braden is back to daycare, and the kids are so sweet with him and they ask lots of good questions about his equipment. Little Jazmyn... let me tell you about her. She is Braden's personal bodyguard and "the boss of him" if you don't already know. While Braden was in the hospital, I was told that I would get a whipping (she said it more like "whooopin", though:-) ) with the Dora belt by JazMyn if I didn't bring Braden back soon. She moved his extra outfits to her "cubby" so nobody would touch them, she made LaTacia take home and hide his boppy from the crib so nobody would bother it, and she missed him so much one day, she crawled up into his crib and when Tacia asked why, she said she just missed Braden. When we finally showed up Monday, she told me she was "so worried about Braden". PRECIOUS PROTECTOR of my son... you just have to love her to death. She spent all day Monday coming into Braden's room giving him kisses, holding his hand, and placing his hand open on the chair (reminds me of all the things cousin Paxton does with him!!). (Braden is staying in the nursery until he can come off the ventilator and cpap... then eventually he will get to sit in his chair in the big room with all the other kids:-)

So we are "ADJUSTING" for the next few weeks, and of course will post again soon with new adventures to come!! We can't thank everyone enough for all your support during these past months. We will continue to pray for our friends still in ICU (Millicent Bradley & family) and those who have gone home already (Leah Banh & family) that God continues to heal their little bodies and keeps them in His care.

The Wilson's: Kodi, Brad, Braden

Muscle Biopsy Back, More Procedures

2008-10-06T21:22:00.009-05:00

So we begin Week 5 straight here at OLOL, but we've been here now for 7 of the past 9 weeks. (Remember we got those two weeks "off", when we got our sleep study and braced for Gustav). We have lots going on while we wait.

Friday we got our muscle biopsy results. The good news, is that whatever we have is not a mitochondrial disorder. Mitochondrial disorders are typically quickly progressing, meaning most children have a life expectancy of about six years old, but many are lucky to make it to eighteen years old. There is also no cure for mitochondrial disorders. So we are happy not to have this diagnosis. Another advantage is that we still don't have an indication on life expectancy, so we aren't always waiting for the other shoe to drop, so to speak.

The mixed news is that we still don't know if it is genetic or not. We still don't have all the answers yet, or a diagnosis, but our neuro will be sending the results off to our geneticist at Texas Children's, and is even consulting with an old professor in genetics. Whatever we have is so rare at this point - that the more heads that are processing all the information, the more chance we have at possibly pinpointing something. Here is what we DO know... his muscle shows increased levels of lipids and glycogen, and one particular protein looks slightly abnormal - it's called dysferlin. Dysferlinopothy (abnormality in dysferlin) is typically associated with Muscular Dystrophy, which we have already been tested for and do not have. So really all we are able to conclude at this time, is that whatever syndrome we may have, it might be similar to MD.
So we have to assume it may also be degenerative, but we still remain hopeful and focused on enjoying every day we have with him and doing things with him as we would with any normal child.

So today we have an MRI done, since it's been over a year, and at a young age the brain grows and changes so much - it's a good to see if there are any changes or if we see anything new.

Today we also had an EKG/ECG (electrical heart activity) and echocardiogram (sonogram of the heart function) done on his heart. The echo results show less than normal productivity, so we will also now be seing a cardiologist. We don't know yet what this means, but if Braden has slight muscular abnormalities (muscle myopathy), then we must also consider that the heart is the biggest muscle of the body, and his syndrome may also affect the heart too... but just because the heart is a muscle and a biopsy came back with some abnormalities, the heart muscle is very different and it's own category comparatively, but we are trying to be proactive at this point.

The bottom line is, nothing in life is certain, even a diagnosis. We have only continued to push for answers because we still want to have more kids and we really want to be informed as we plan for the future of our family. We will continue to love Braden the best we know how, for however long we are blessed to watch over this special child.

Our neighbor Kathy came by today to bring Braden a new frog - isn't it sweet?

The other photo is depicting some therapy: the therapists gave Braden half tennis balls to tape his hands too to keep them outstretched and in a relaxed position... you can imagine that keeping that thumb of his tucked in between his index and middle finger is creating a constant gap, even when his thumb isn't wedged in between them. While it's one of the special things that makes Braden so adorable to me, I know at some point he will need to overcome this "new normal" as he eventually figures out how to use his hands to grasp and hold items.

We will post more pictures as we take them. We now know how much you love them!
Kodi, Brad, and Braden

His New Wheels and Another Successful Round of Surgeries

2008-10-01T18:42:00.010-05:00

So Braden seems to really be enjoying his new set of wheels, and we sure hope so, since they cost more than the cost of mommy and daddy's first cars combined! :-)

His therapists and entire medical team are so pleased to see him get in his chair every day. I had to laugh at Braden yesterday, when PT and OT came in to work with him, and he fussed them the entire time, and as soon as he got into his chair and they started working with him - HE FELL ASLEEP!! It was so funny. He is such his own person, we take such joy in watching his little personality continue to come to life. Although he is nonverbal, he certainly knows how to communicate unhappiness, satisfaction, and comfort.

Today they did a bronchoscopy on Braden to see what his airway is doing, and to measure him for a custom trach tube. They also took a small biopsy (doc says out of 300 he does a year, he may do take 1 biopsy sample, so I guess we are that one). We may know something as early as next week. The bronch showed that Braden's upper airway lacks muscle tone nearly completely, and therefore that's why his airway was closing off so often, and why his oxygen saturation was always well below normal. This reconfirmed that the trach was the RIGHT procedure to do for Braden. Now that he keeps his O2 sats in the 97 - 100 range, his carbon dioxide saturation is way down, and so are his seizures!! We are down from 4 - 6 seizures a day, to only 1 or 2 a day!! YEAH!!

We are still waiting for the results of the muscle biopsy, and we keep our docs and nurses busy with questions daily about when we will know something:-) Our timeline is now in the hands of what I will call the "vent gods", because we still don't have a local provider to order one for us, so for now, we are at the mercy of what has been described to us as a game of "medical CHICKEN". The local provider won't order just one, they have to have been sure there will be more -check, that's been done. The insurance company would prefer we use whatever the local provider is getting a good deal on (read: making the most money off of, and cheaper rate for the insurance company). Our specialist says he won't budge on taking anything other than this new specific vent he wants for all his new patients - it's better for us as it's smaller, quieter, lighter, and better battery life. So now the specialist won't release us from the hospital until we get the right vent (PICU daily charges are by no means cheap for the insurance company), so it will be in their best interests to just comply and give us what will be best for Braden. We are the first family to use this new vent, so at least our struggles will make it easier for the patients here in BR to follow us in getting this new vent. We are getting used to being pioneers in our own way, at least Braden is anyway. Oh well, if God has taught on anything on our journey, it's how to be patient and flexible at the same time.

So we will still be living here at OLOL for the time being, we will send an update when we have more news to share!
Kodi, Brad & Braden

It's HERE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

2008-09-29T16:23:00.003-05:00

Most of you know we have been patiently, or not so patiently waiting for our "mythical and magical" CHAIR to get here. The Special Tomato seating positioning chair and stroller base with tray table and umbrella are HERE!!!!

We put Braden in it for the very first time this afternoon!!! Mommy wheeled him through the PICU and he was just taking the new scenery all in. He seems to be very comfortable and content in his new chair! He's even sleeping in it as we speak...

Braden has been trying to "sit up" all on his own, and so he's pulling himself forward out of the chair a little bit, so we will be talking to our Occupational Therapist, Gayla about helping us create a velcro padded headpiece to keep Braden in the correct position. After all we've been through in trying to get the chair, this is certainly a day of celebration in the Wilson "pod" in the PICU. His nurses and respiratory therapists were all so very excited for us too - they haven't seen a chair like his before:-)

It's looking like we won't get to leave on mommy's proposed timeline, but the good news is that we have discussed an "exit strategy", so we have started putting some things in place for that. Tell George if he needs help planning an exit strategy for our troops, give me a call, I'm all for getting a plan in place for us to stay here no longer than necessary:-) We just HAD to get the pictures up today to share, for all of you have been as anxious as we have to get the chair. Praise God for the small things that make us happy, like we are accomplishing something important for Braden.

His whole medical team is excited to have the chair to alternate positioning in the bed with positioning in the chair throughout the day, to hopefully help get rid of all that "junk" sitting in his lungs and clear out this pneumonia at a quicker pace. Please keep praying for our health, and for home nursing to become available, and for our ventilator to be available soon so we can train on it and go home. (Now it's looking like our home vent might not be ready in the timeline we were originally told.) Thanks for keeping us in your thoughts and prayers.
Kodi, Brad, & Braden, our "special tomato"

Another pneumonia while waiting in hospital:-(

2008-09-27T21:40:00.004-05:00

So Thursday we discovered after a chest x-ray that Braden has another pneumonia. He had been running a fever, his skin was looking a little mottled, and Nurse Carrie agreed he just wasn't acting like his normal self, so she got the docs to order a chest x-ray, blood gas, blood culture, and sputum culture. The chest x-ray shows some pneumonia, so he was immediately put on some antibiotics. The sputum culture is growing bacteria, so he will stay on antibiotics.

Having the trach will not give him pneumonia, but we feel like he got it because he's been just laying in the bed for nearly a month, and moving him around in the bed just hasn't been enough. So we pushed the doctors to allow us to take him off the vent for short periods throughout the day for us to play with him, do therapy, and just snuggle in a more upright position. So we have been "stealing" time with him doing just that the past few days. We have him up on the therapy ball standing up against it, so he's getting to engage his legs in a standing position, he's also enjoying some tummy time, which he hasn't got much of since the surgery.

We've had to put him back on the vent machine more this week... mostly he was on CPAP (continuous positive air pressure) to help reduce the secretions, as when we tried keeping him on the trach collar, mommy was up every 6 - 12 minutes to suction. The doc felt putting him back on CPAP constantly would help reduce those secretions, and it did help. A few nights ago he had about 10 apnea episodes, so now he is back on minimal vent support, at least at night. Since he has been sleepy that past few days because of the pneumonia, he has been put on minimal support for the time being - except when we "steal time" with him off his machines:-)

The past 2 Saturdays we have watched LSU play football from the comforts of his hospital room. Last week we had him dressed in full jersey-garb, and even got a surprise visit from Winnie the Pooh. Braden was checking him out, and then started playing "possum", but peeking out of one eye, so Pooh started to play peek-a-boo with Braden... it was adorable. Today Daddy got some QT with Braden doing therapy and just snuggling - can you believe how big he is getting?? He is getting so long!!!

We have a light at the end of the tunnel, if all goes according to plan, we will be out of the hospital on or near October 6th. We've been here almost a month - yikes! Mommy misses her new bed, A LOT... as "sleeping" in the hospital is a lot of insomnia, falling asleep after hours of restlessness and finally getting to sleep sometime after midnight or 1 am,waking for Braden's "witching hour" from 3am - 4am, and then waking up for shift changes around 6:30 am, and the countless bells and chimes and traumas throughout the night on our floor. Oh, did I mention our "bed" is a pull-out chair? It's not awful, but it's certainly not helpful if you already have back problems.

We are hoping this will be our last week here. Pray they can find home nursing for us, as any kind of help like that would be wonderful for Braden to have care in his home environment, even if it's one day a week or a few hours a week to help out mommy and daddy! Thanks for the continued support,
Kodi, Brad, & Braden

Doing "Sprints" off the vent!!

2008-09-18T15:26:00.004-05:00

Daddy and Mommy are busy learning "trach care"... how to clean the site, how to change a dressing, (eventually) how to change a trach tube, how to do sterile suction, etc. Daddy and Mommy are already "pro's" according to the nurses, evidently, most parents aren't as proactive as we are to actually call them in so we can get checked off some skills. I guess most parents are usually pretty timid about getting things checked off the list so they can go home. I understand the hesitation, after all, we are talking about your child's airway - without proper care and appropriate technique, you can quickly end up in an emergency situation to keep the child alive. I guess we are veterans of wound-care techniques since the care is not different than what we did with his feeding tube. We are even a select few parents allowed to change that at home too, as many have to take the child in for an office visit to have it changed. I share with you this, not so we can be proud or to brag, so that when your prayer list is empty, you can add the parents of special needs children, as many are not equipped with the appropriate life skills, decision-making skills, and common-sense to be independent of a medical team to properly care for their child. Please pray for those children and their parents, as many children suffer due to poor parenting.

Today was our second day off the ventilator!! We are still attached to it for pressure support, and he did good last night. Today we got to completely come off the pressure support for one hour periods at a time, what they call "sprints". They attach what is called a trach collar while he is off the ventilator pressure support. It's similar to a nebulizer mask, blowing a small amount of O2 and humidification to the open trach. HE HAS DONE VERY GOOD!!! He has kept his sats around 97 - 100 off the vent, can you believe it? PRAISE GOD FOR HE IS GOOD!! So it's looking promising that we will only need ventilator or pressure support when we are sleeping, and that we might not need ventilator support throughout the day! But it's all up to Braden, and hwat he and his body tell us he can handle.

We will still have to be here for a few weeks while they get us set up with a new-fangled low-noise lightweight ventilator. This mainly will be our only hold-up from getting to go home, as most of our trach skills have been checked off.

I wanted to give thanks to our friends who have provided us with prayers, support, a listening ear, friendship, and even treats and gift certificates while we are cooped up here at the hospital. The offers to come sit with Braden so we can get some "time off" is appreciated more than we can ever express. Our local pastor from Trinity Lutheran has been amazing in prayer and visitation, as have been our other hospital chaplains that stop by to see how we are doing and to offer up prayer on our family's behalf. I want to thank friends and family who have sent cards of encouragement, and left messages of support, and continue to pray for our journey. We would not have the same positive outlook and high spirits without the support of our family and friends. Thank you for always lifting us up in your thoughts and prayers and actions. We love you for all you do for us.

The Wilson Family

The SUITE Life

2008-09-14T22:39:00.006-05:00

Hello friends-
Today we write you from Braden's new "suite". Ike affected condensation over our light fixture in our bay and was starting to drip on Braden, but it turned out in our favor, as a room off the bay's opened up: complete with a shower, sink, toilet, and a door. Braden is experiencing far less startle seizures in the quietness and comfort of his new diggs. His care team seems very excited for him to have this peace and quiet too.

Ike only passed over us with a few hurricane-strength bands, but it did cause a lot more power outages, and so many who finally had restored power, were once again in the dark. Of course, traffic lights were out, and many businesses and schools closed early Friday after the initial bands passed over. The Galveston and Houston area took the brunt of the storm. However, lots of flooding in nearby parishes, adds insult to injury for many here. Several families are still living in the dark here. We did lose power at the house again after Ike hit us, but we were blessed to have it back by the end of the next day.

Brad and I blew off some steam this weekend by helping the Heckerts begin demolition on their house. Damage left behind by Gustav is already growing poisonous black mold in their home. We helped them knock out the walls and ceiling of Jackson's room, and helped to start stripping the 40-year old wallpaper off the bathroom walls, since the ceiling and other portions will need to be redone too. It was disgusting, but also fun to blow off some steam, and of course, it was nice to get out of the hospital and help some friends who could also use a break.

Some good news, Braden was MRSA positive when he came into the hospital, which probably is what contributed to his respiratory condition surrounding the hurricane. That wasn't the good news... the good news, is that his second test came back negative for MRSA! On a side note, after talking to more special needs moms who have kids with respiratory conditions... a LOT of them suffered respiratory infections post-hurricane due to the barometric pressure changes having such an affect on them.

Tomorrow is a big day, Braden will get his first trach change, and then we get to train on his care and get him measured for a custom trach. It's a big week for mommy and daddy as we learn to take over caring for his trach. Then it's time to learn about the ventilator - pray for us to learn this hopefully final piece of equipment!! :-)

Love to all - the Wilson's

Recovering Well, Ike moves closer

2008-09-11T16:08:00.008-05:00

Here is Braden in the hospital
Braden is recovering well, everyone from therapists to nurses to doctors just keep commenting on how great he looks, and I have to agree. He has good color (he's not flushed like last week), and he seems to be handling the pain pretty well, but we give tylenol and additional sedatives when needed, as his seizure movements are NOT helpful to his recovery process. They still want to keep him midline to allow that trach hole to heal up really well. You know our Braden, he has very few movements that he does well, and one of them is moving his head side-to-side, which is a no-no for his healing process. So that part is keeping us on our toes to keep the balance between sedation and stillness. He is totally off the muscle blockers to keep him totally still, so right now it's a little tricky, but nothing to be too concerned about. You can see we've also given him some earplugs, because he still startles to loud noises, and it was causing those bad seizure movements - it seems to be helping him rest more easily and reduce the startle-seizures.

This house had a HUGE TREE (cut up in the foreground) that crushed it.

This Tree is on the same street as the house - these are common scenes all around the city.

This is a view of the same street the house and tree are on - a regular photo pre-storm would look like a normal little neighborhood... can't you see how it looks like some overgrown country road with piles of vegetation as tall as the house? The scenes like this seem so "third world" to me.

The city still hasn't restored full power, so many are still cranky about the lack of power and having to entertain children, go to work, and find a way to feed the family and wash clothes without power. It's the drastic change to their normal routine that is difficult, imagine losing your refrigerator and all it's contents, not having a stove/oven, washer/dryer, air conditioning, sleeping 6 to a room, and no electricity. Change like this is tough for children who don't understand, and our college students who have never faced adversity before. I've attached a few more pictures - you can see how some homes are totally destroyed, and those that weren't totally demolished by a tree but suffered roof damage, are now suffering from the awful stench that is becoming bad mold, making dangerous and questionable living situations for those who DO have power... it's still not "normal" here by any account, but we are all trying to make the best of a bad situation. If you want a humorous take on our situation, I can e-mail you the "Guide to Surviving Gustav" that has brought many still in this situation a good laugh. E-mail me at klwilson@lsu.edu and I will send it to you.

Thanks for the continued prayers in the coming weeks as Braden recovers. We will also be praying that Ike will miss us altogether, but given the size of the storm, we will likely see high winds from outer bands starting tomorrow evening. Thanks to all who check on us here or elsewhere!
Kodi

Surgery Successful, Hurricane IKE Looms

2008-09-08T15:37:00.008-05:00

This morning Braden's procedure went very well, and without complication. They performed
a tracheostomy and a muscle biopsy. The tracheostomy is to help him breathe easier, by by-passing the areas of the throat that are low in muscle tone, causing a floppy and collapsible airway. He is paralyzed for the next few days, so that his surgery heals while in this critical state. He is on a ventilator for now, and in the coming days, as he is allowed to have movement once the trach "heals in" they will eventually try to wean him off the ventilator and see what he can do on his own.

The muscle biopsy was performed and will be shipped off to our genetic specialist at Texas Children's. The biopsy can often give results when a blood or dna test proves negative. It is a belief by his medical team that Braden has some sort of syndrome or something occurring at a mitochondrial level. Of course, answers won't be available on that for a few weeks.

We thank the many who have been praying for Braden today and continue to pray for us along the journey. His surgeries went well, and he looks really good and comfortable. Of course, you know Braden makes his own path, and while all the muscle blockers, pain killers, and sedatives he is on, he should be "knocked out", but not our Braden - he is peeking through his heavy eyelids, and occasionally opens them all the way, letting us know he is OK.

I had to share the second picture with you... this was on the door frame waiting for Brad the day he went home from the hospital after we had made the decision to have the surgery for Braden. We took it as a good sign - have you ever seen a tree frog SO BIG?? We are Fully Relying On God to take us through this next adventure and trusting in Him to give us comfort and peace. While we were nervous and anxious about the decision, today I feel peace about it and feel like this was the right thing to do for Braden.

GUSTAV - still only half of the city is back up to power, but in the next few days they will be down to a few isolated areas hit hardest with tree damage, etc. The additional 13,000 energy trucks only go so far to restore power to over 200,000 people left powerless in our city, and another 300,000 throughout the state. Restoring all those lines will take time - they are not tree excavators, after all, they are power folks. Brad came home to restored power yesterday afternoon, so I am sure he is enjoying the comforts of A/C again. However, as Ike looms over Cuba, we are not totally tearing down our prep set-up, in the event he comes our way to create havoc once again. Mainly, we are worried about the city not getting our debris piles picked up in advance of the storm, and all the broken limbs and stumps become flying projectiles in the path of another hurricane.

Thanks for the prayers and checking in on us, we will post again later in the week.
The Wilson's

Gustav Aftermath - Saturday update

2008-09-06T23:42:00.008-05:00

More of the city has some power restored, I'd say we are getting closer to half, and about half of gas stations are operational thanks to the swift and strong hand of our governor taking the situation by the reigns to assure the people of this state they have adequate access to essential needs. His actions and public statements to the power companies that four to six weeks to restore power was not acceptable I think has helped calm the fears and anxieties of the people in this state. It's at times like this you see the best and worst in people, we have seen both ends of the spectrum, but mostly we are seeing be extra kind to one another. I am hoping the city of Baton Rouge will rise to the occasion and refuses to host a setting to the likes we saw post-Katrina, we are determined to make things better than that.

Our house is surrounded by restored neighborhoods to power, but our one little patch remains in the dark. Our house would lose power about 3 times a week for no real reason, so we are hoping that whatever small issue was creating the frequent power loss has been broken in a manner that will allow it to be fixed at full capacity without the inconvenience of resetting the clocks all the time.

I was trying to come up with language to accurately describe what we have seen, as the pictures just don't do it justice. It's like we got a huge hailstorm of very large tree branches - they were EVERYWHERE. Most of my pictures are post-storm and after some clean-up has already taken place. But you couldn't look anywhere without seeing huge tree branches everywhere, like some kind of tree-branch forest for miles. Neighborhoods that looked perfectly normal at one time, look like overgrown dead-end country roads, resembling nothing like they did pre-storm. You can see just how some of these HUGE trees have roots as tall as a house, and they still toppled in the storm! It's surreal in some ways, like you woke up in another country with new landscape, new politics, no power, no food, crumbling homes, and an uncertain future for improvement.

Braden is scheduled for surgery Monday mid-morning, so we can really use your overtime prayers during that time. He will not likely be taken to "recovery", since he won't be waking up for four days. They will be giving him muscle blockers to keep him perfectly still while the trach heals in, so he will be "out" for about five days or so.

God continues to bless our family with the fortune of the love of friends. The Heckerts brought Braden a new monkey and a new frog friend to keep him company in his crib. Tonight as he was awake until almost 11pm, he was getting friendly with his new monkey, while enjoying his old one too. We are most grateful and overwhelmed by the love the Breaux family has showered upon us. The trach surgery brings more responsibilities and is more involved than Braden even is now. It wouldn't be fair to assume that Latacia and Kidz Korner would be willing to accommodate to Braden's new level of needs. But God wrapped His arms around us tonight as when they were given the news about the trach and we asked them if they would still be willing to care for him, the response was, "Don't you dare take our Braden from us, he's our family too". The worry we had about the burden this could be, was immediately lifted in love by our extended family of friends here. Without a doubt, we are blessed beyond our own comprehension.

We thank you for your notes of support, posts on the blog, phone calls, cards, and all that you do to let us know we are not alone in our journey of uncertainty. We hope by sharing our story with others, that just maybe others can be blessed too. Thanks for sharing the journey with us,
The Wilson's

Gustav Aftermath - Thursday night update

2008-09-04T22:37:00.004-05:00

To make our life even more interesting, we had to bring Braden in to the hospital yesterday morning... and had we not been trying to stay out of harm's way, we would have brought him in Sunday evening. We had to "bag" Braden (a form of rescue breathing associated with CPR) four times a day while evacuated, and it escalated yesterday morning, so we called to ensure the hospital had air conditioning, to handle Braden's issues with overheating.

So we are on life support again, but he is resting comfortably for the first time in a week. I think all of us are. Nobody should ever have to do CPR on their own child, and when you do it as many times as we have recently, it's very exhausting in all the ways you can imagine. For many reasons I don't have time or the energy to expand upon now, but promise to do so at a later date, we have scheduled Braden for a tracheostomy next week. This will allow him to use his energy for other things, instead of spending every ounce of what he has just trying to breathe! This is not a decision we are entering into lightly, we have been discussing this potential outcome for some time. And we still have many questions for our family meeting with the medical team later this week, but we are taking the advice of our medical team, and they are encouraging a trach. Please pray for his surgery to go well for that, we really do appreciate them and ask you keep praying for him.

Life after Gustav... like I said, progress is at a snail's pace. Some gas stations have finally opened for people to get gas for their cars and generators, only after the governor said that a week or longer without power is "not acceptable", and bought generators with state money, so some gas stations could re-open. The scarcity of gas here has people really on edge, waits are usually over an hour in a gas line, and the people here are losing patience for power, supplies, and some relief. The national guard has arrived and began handing out MRE's, blue tarps, bags of ice and waters to those who come through line. 95% of all traffic lights are still out, making traffic a NIGHTMARE for those of us who HAVE to report to work. A lot of people are out trying to get supplies, and sit in the comfort of the AC in their cars. About 20% of the people in Baton Rouge have power - but that's probably a little overstated. For some it will be early October before they get power back, and we could be one of them. A few banks and grocery stores and pharmacies have reopened for cash-only business, easing more of the uneasiness that comes with cold showers, no power, no air, and no idea when it will be over. I think as the city works to come back "online", people will start to relax a little more and settle into their situation... but that patience will only go so far if they have to wait weeks on end for the power to return to their own homes.

These are some pictures from around Baton Rouge, near where we live and near campus and on-campus. It's like a million tornadoes went through here, and already most of the tree debris has been piled up and organized, so if you want "day of" storm photos, my student paper website has some good ones at: www.lsureveille.com

Daddy is keeping up things at the home front while mommy makes the sacrifice to get hot showers and AC at the hospital with Braden. The staff at Our Lady of the Lake has always been amazing, and once again in a disaster, they are providing us with a calm and peace amidst the madness outside the hospital walls. We are both "essential staff" at LSU, and have had to work, but we are trying to rest when we can. Please don't worry too much about us yet... if we are without power for a few more weeks, we may be asking favors of those who can help, but for now, we are fine. We have faced much diversity in the past two years, so we are already equipped to rise to the occasion and handle chaos all around us. We do appreciate your continued prayers, after all, we are only human:-)

Will post more this weekend.

Gustav Aftermath - Tuesday night update

2008-09-04T22:27:00.004-05:00

LSU Rec Center portion of roof
The new "skylight"

Date: Tuesday, September 2, 2008, 8:05 PM

Gustav has been the most devastating storm on record for Baton Rouge, sustained winds at 65 mph, gusts from 91 - 96. Gustav was literally pounding on our building as debris started flying everywhere. Initial reports to your part of the country may have been highly underestimated, so let me share with you reports from friends throughout the state...

We evacuated to the LSU rec center to be near emergency services, as Braden has not been well and really hasn't bounced back from his last pneumonia. The rec center building lost it's roof over the main gym, and has a new skylight, reminiscent of the New Orleans Dome. The rain coming into the entire main gym will total the whole floor, roof, and possibly upper track. I will post pictures as soon as I get access. You could hear pieces of the copper flashing slamming into other parts of the building, and I got video of the roof flying off the building piece by piece.

Only parts of west campus are back in service. There is only food access at one dining location on campus, and they don't have full power, only generator power and no A/C, you can imagine the chaos and humidity. While initial estimates were that the rec and other areas would be up last night with power, tonight there is still no power or A/C and the 18-hour generator are holding out well past what we expected. You've never seen so many large trees snapped in half (unless you've seen my pics from the Greensburg tornado damage), and given the amount of trees literally uprooted and branch and leaf debris, it's amazing there are actually any still on the trees. The lakes areas suffered lots of down trees, and they even shut down lakeshore drive for clean-up today.

We made our way home today to get our generator hooked up to the fridge and freezer, and Saturday night our friends the Heckerts helped us install a window A/C unit for Braden. On our drive home, we saw buildings tore apart, billboards and store signage demolished, and many sad sights of homes with trees smashed through rooftops and splitting homes in half. Power lines down everywhere, and some that made it are drooping too low for any type of 18-wheeler to pass under.

We only suffered minor damage... Tree down over the back fence, chimney top blew off, and consequently got some water in our fireplace. No apparent roof damage and windows all in tact. WE ARE THE LUCKY ONES. This is not the picture of what it's like throughout the area.

The Heckerts lost part of their roof and water damage to Jackson's room and two others. On our drive home from campus, not a single traffic light was working, not even the hospital had power. The interstate was even shut down due to downed power lines, and they re-routed traffic around it. Other colleagues have suffered major roof and damage to their homes, some may suffer more loss in the days to come, as rivers are expected to crest and surpass flood stage and create lots of flooding tomorrow through Saturday.

There is no power here, nearly ALL of Baton Rouge is without. We have heard one report of a small area near LSU has some power tonight, and a few neighborhoods too, totaling about 10 - 15,000 with power, leaving the remaining 250,000 of us without power in BR, and nearly half a million more in the state without. Two hospitals now have full power, leaving 3 major ones still not up, generators down, and no A/C. Even north Louisiana parishes are without power - most of the state is without power. I am certain most of them did not make provisions for this storm like we did, but they will likely be restored more quickly than we will. Estimates for restoration vary from 3 more days to 10 days. Parishes along the coast may be without for up to 8 weeks.

We will keep hope to get power in 3 days, however, our provider reports 99 percent of DEMCO customers are still without, and they've had a whole day already, so who knows how it will play out for us.

Our current anxieties center around being able to get gas and oil to keep the generator going, as most pumps these days require electricity, not to mention many stations ran out as the storm approached. We are working day and night to keep Braden breathing well enough to avoid a trip to the hospital, he is keeping us on our toes.

LSU has been closed for the week, and if their power system doesn't get restored by week's end, it may be longer. It will be a long recovery, and for some of LA residents near cresting rivers, the worst is yet to come. Keep praying for a quick recovery, and we will keep you up to date as our capabilities and time allows.

We are "hunkered down" at the Rec at LSU

2008-08-31T22:45:00.003-05:00

Braden has not had a good few days, so we have decided to ride out the storm at the rec center. We have "quarters" in the very center of the building, with no windows, and in a very structurally sound building. We wanted to be close to intensive care, in the event Braden needed it, and the PMAC across campus is acting as the local triage... so we figured being that much closer was a better idea than trying to get out of our neighborhood, which is prone to flooding right at our corner. We are also 9 miles closer to the hospital here too.

We are in the safest place possible we could be in Baton Rouge, so don't worry about us. We will try to make contact again once the storm has passed, but it will probably take some time to reestablish contact via internet and phone. The good news is that Baton Rouge is the "staging center" for storm response, and once again LSU is right in the middle of it, so we expect to be one of the first back up after power goes out.

Just pray for all of us - that's all we need as of now! Thanks!!

Bracing for Gustav

2008-08-28T09:03:00.005-05:00

Sleep Study Photo

Well, Gustav is heading for us, and we are trying to be prepared. We are trying to get all our supplies in case we lose power (and yes, they do price-gouge when a storm is approaching), and we have a back-up plan. Please pray that God will spare our area of the country from severe damage, as many families are still recovering from losses in Katrina and Rita - we were one of the lucky ones and Baton Rouge was spared from the devastation seen in New Orleans and Lafayette and our low-lying country on the gulf coast. Today is the 3rd anniversary of Katrina, so many here are really on edge as you can imagine.

In a strange twist of fate... today is also the anniversary of when we found out we would be having a baby, as we evacuated from our parish seeking cover from Katrina. To keep the strangeness alive, Braden's chair from Sweden has finally arrived and was supposed to be delivered today, however the company went into emergency preparedness mode, and they canceled delivery of the chair today:-( Of course we are bummed, but we are also OK knowing the company was taking care of all oxygen patients (like us), making sure they all had cannisters before the storm hit. We feel pretty prepared for the storm... classes have already been canceled for Tuesday, so providing we have power or the storm misses us, we will update the blog as usual.

We did a sleep study last night, and I use the term "sleep" loosely. They wanted to see what Braden was doing at night with his oxygen and carbon dioxide levels. We will have some results in a few weeks, results we hope to take with us to Houston and hopefully see a pulmonary specialist there.

Pray for the entire Gulf Coast region!! Aunt Jeannie and Uncle Jerry from Pensacola were already headed to Branson for a family gathering, so we are praying for their home's safety, as they have taken some hard hits in the past. Thanks for the continued prayer for Braden and all of us - we feel your love across the miles, and your encouragement really does give us the fuel to keep going!

The Wilson's

We're home!!!

2008-08-22T16:23:00.006-05:00

We finally got to go home Friday afternoon. Evidently, all Braden needed was one of his parents near him, because his monitors didn't go off ALL NIGHT!! This means, he his back to "Braden's baseline" what they would call his "normal", and that gives us some time to do more testing before making any decisions about his condition for now. We are scheduled for a sleep study next Thursday night so they can see a big picture about what Braden is doing with his airway at night, and what his CO2 levels are like, etc.

We are headed to Houston in a few weeks and hope to get a second opinion about his respiratory condition from a specialist there, so pray we are able to get an appointment for the same day, with the two doctors we feel could best understand Braden's situation, and what will be best for him in a long-term sense.

We went to swim class today, after 2 weeks in the bed, it was a great opportunity to get Braden to relax and get him a good stretch. Braden is moving into his "terrible twos" and really starting to assert himself when he wants to be left alone, which is great to see him develop some cognitive ability!! oh yes, he is working on perfecting his "fake" cry too, and figuring out how to use his voice for more than a cry. Mommy gave him a new haircut tonight, and the other pic is from our last day in the hospital.

We plan on just trying to catch up on some much needed rest this weekend. We have lots going on in the coming weeks, and we will keep the blog as up to date as possible. Thanks for your support, your love, your prayer, and your friendship... I don't know where we would be without so many wonderful people in our lives.
We love you all!
The Wilson's

Trying to get over the "hump"

2008-08-19T19:39:00.002-05:00

Braden is starting to perk up a bit, and the nurses and therapists are getting a kick out of seeing him try to shake off the cough-assist mask, the IPV mask, or the suction by shaking his head back and forth. They still find his sad little cry a little heart-breaking and pitiful, so he's racking up some "pity points" with the staff too. Even the doctors were noticing his pathetic little cry.

When he rests, he seems to be getting some good rest, because he has lots of spunk to share when he's awake. When he decides to really give a vocal fit, it lasts about two minutes, but he really raises some eyebrows of his caregivers.

He is still on the vapotherm, but they are weaning him off the oxygen level so maybe we can try room air tomorrow if he can hold his saturation as they lower his support levels. Respiratory is still spending lots of time on him with treatments and such, but being so aggressive seems to be helping him get better. So while we can't give a definite date in which we expect to be released, we are fairly certain that it will be before the week is over.

As we've been here for awhile, it's given us a chance to consult with many of Braden's doctors and specialists, and I think we are ready as a family to start looking for more answers and discussing future procedures and probabilities. As soon as Braden has recovered from this spell, I think we will move ahead with the muscle biopsy, as it really is the last thing left to give us any sort of specific answers on what it is Braden might have, as often a biopsy can reveal things not seen in a blood or DNA test. We will probably do the bronchoscopy and other tests to see where we are with his airway and physical structure, as it is suspected Braden might always be in some state of pneumonia based on his x-rays that seem to all look suspiciously similar, but never really point to a definite pneumonia.

So pray for us, as rounds of testing can be quite wearing emotionally. And please pray for our medical team to move towards a diagnosis - we know that we may not get any answers, but feel we are closer to exhausting everything available to us to find an answer. We remain hopeful despite any anticipated prognosis, as Braden continues to do things that early on he was not expected to do. God has been so good to our family, and we have been blessed by the many who check his blog and lend their friendship, support, and prayer - we fully expect to continue to find blessings in our situation.

Thanks for sharing your love & support in our time of need,
The Wilson's

Rollercoaster day

2008-08-17T20:44:00.004-05:00

Well, he had a great night, but this morning he gave us a blue spell after trying to transition him from vapotherm to BIPAP, and we had to bag him. After some serious suctioning we got out a LOT of THICK mucus. Last night we discovered that at some point the vapotherm had been accidentally turned off. We noticed it last night before we left, but it dried him out pretty good, and I suspect is what made things so difficult this morning.

After a blood gas at 80, his medical team decided to put him back on the vapotherm. We have decided to just attack aggressively with lots of humidification, cough assist treatments every 2 hours, breathing treatments every 2 - 4 hours, and suctioning as needed. He seems to have stabilized by early this afternoon, as the blood gas came back at 54.

Our little tiger cub has been crying most of the day, and while this is out of character for him, the nurse assured us that sometimes kids with respiratory conditions who come off the vent grunt or coo or sing to help keep their airway open. So while it is just so sad to hear him cry, it gives is hope that Baby Bee might developing some cognative skills, and that's exciting! He really sounds like a little tiger cub when he cries, I'll try to find a place to post it on-line that's a little more private than "youtube".

Tonight we have taken gas to try to establish a "baseline" for Braden, and his CO2 was at 69. We will take another in the morning to see where he is. Keep the prayers coming, as today has not been easy... we thought we might get to go home, but now we will try again tomorrow or maybe the next day, providing he keeps having good nights, and can wean him off the vapotherm. He is certainly getting pity points with his therapists and nurses with the tiger cub cry, let's hope it's helping him feel better too:-)

Keep the faith!!
The Wilsons

Off the ventilator, course throat

2008-08-16T18:39:00.004-05:00

Well, little man transitioned off the vent so much better than anytime before!! Mommy's stomach was in knots leading up to the transition, but Braden is proving what a big boy he is becoming, and kept his sats up so well, he never required any "bagging" (manual rescue breathing). God is so good!! Mommy got to snuggle with him this afternoon, which was good for both:-)

Of course the vent has made our little man's cry is a little rough/course and he sounds like a little tiger cub learning to "cry" for the first time, so it is a little sad to hear him cry. He is on vapotherm, which is a warm humidifier nasal canula with oxygen. It's helping to keep his secretions nice and loose for suctioning, and we are keeping an aggressive vest therapy and nebulization schedule. We hope to have an exit plan tomorrow, but only Braden can decide that as doctors determine how he is adjusting to life off the ventilator.

Thanks for the continued prayers, we will need them in the coming weeks as Braden recovers from the ventilator over the next 6 - 8 weeks.
Our thanks, The Wilsons

OK, one MORE day on the ventilator

2008-08-15T11:16:00.004-05:00

Because of his "de-sat" episodes he has occasionally throughout the day, they will keep him on the ventilator for one more day. He is doing well as they continue to decrease the actual support the machine is providing, and he is starting to do some things for himself. So if all goes well, he will get extubated tomorrow, and we can maybe go home Sunday, providing he does well off the vent.

Pray that the transition goes well - this is the part that makes us all nervous, the transition off the vent. Braden may very well surprise us, as he is getting bigger and stronger. We thank you for your continued prayers - we feel them!! We are so grateful to have so much wonderful support and prayer for our little soul.

We hope to have an update Sunday with our status.
The Wilsons

Still on life support, but things look good

2008-08-14T13:16:00.005-05:00

Well, it looks like we have to stay on the ventilator another day:-( But Braden had a GREAT day yesterday, and had a pretty good night too. (The nurse said sometimes just having the parents bedside helps the little ones get better faster - they can hear the voices of those that love them and are reassured they are in a safe place and can relax.) He is still having episodes of desaturation, which makes the medical team uncomfortable, so we hope to try to take him off the vent tomorrow. Right now our focus continues to be getting him respiratory IPV treatments every 4 hours to keep breaking up all that stuff inside him. He is such a big boy now, and trys to cough all that stuff up, which also causes his sats to drop... as he recognizes there is a tube in the way of his efforts, so he gets mad and frustrated and will clamp down around the tube or on the suction tube.

He seems to have some good periods of alertness, so that's another sign he is feeling better. His eyelids are barely purple now. He is giving all the nurses and respiratory therapists sweet stares, and of course, is making new girlfriends:-)

So, it looks like we will still be here for a bit, because he will have to make it through a good bit of time OFF the life support before they let us go. Just pray for Braden to transition well, as coming off the vent is something he can really struggle with. He is being so sweet these few days, not fighting the tube, so we pray he will be ready to "take over" after all his rest on the ventilator.

Thanks for the prayers & support,
The Wilsons

On the vent, but comfortable

2008-08-13T15:43:00.003-05:00

Braden had a tough night, by now you might see that the overnights are his toughest time, and you can understand how mom and dad are tired, run-down, and sick too, since we have been battling this virus since last Sunday/Monday. Although he had some big desaturation periods, the nurse seems to think that something in him "broke loose" because they had to do lots of suctioning for about 20 minutes in the wee hours just to get it all out of our little guy.

The doc seems to think that he is just dealing with a virus and battling "mucus plugs" in his sinus cavities. We are now getting an antibiotic, as the sputum culture is showing some things growing, and this should knock out whatever he has. In the meantime, we are keeping an aggressive pulmonary regimen of every 4 hours getting treatments on the IPV (like that vest for ventilator kids), which has seemed to help clean him out.

Braden has never been comfortable being on the ventilator, but this time he seems to not be fighting it every time he is awake. Because he seems comfortable, of course mommy and daddy are more comfortable too... as the normal scenario is that Braden dislikes the tube so much he's usually trying to cough it out and push it out with his tongue. For whatever reason, this time, he seems to have found a middle ground. So we are making small strides for now, and things are looking up.

We still have no indication about our length of stay, so for now, just pray that God guides our doctors and nurses to the correct plan of care so that our stay is only as long as it needs to be. Thanks to all those who have reached out to us and who have been praying for us!! We appreciate all of you more than we could express.

Maybe tomorrow we will have some news to share.
The Wilsons

Still here for a bit - we are now on life support

2008-08-12T07:47:00.006-05:00

Well, things were looking better on the outside, but last night I noticed that Braden's eyelids were still purple (one of his sickness "tells"), his cry has been very week, he is not fighting suction, he still cannot cough on his own, and he started doing the double-breathing thing again. Last night we got a pic of him with his little stuffed friends while getting his breathing treatment, and I took another picture of him getting the different vest here - as I think it makes him look like a SUMO wrestler:-)

The doctor agreed that maybe we should check his carbon dioxide in the blood gas, since we hadn't taken one with him off the BI-PAP. The reading came back elevated at a 67, which is above the 20 - 35 normal. She agreed he is not well enough to come home yet. His respiratory doc says he probably has a nasty virus, and we will have to just let it run it's course, but we will take another chest x-ray to see.

He was resting nicely when we left for home last night to get some good sleep, but once again the in 3am hour, we got a call that he had a blue episode, and they felt it would be best to put him back on the BI-PAP. So this morning, we are back on the BI-PAP, but at least our little guy is resting easy and not having to work so hard to breath. They way he acts, it's obvious he's so tired. Doc says high carbon dioxide levels can cause lethargy.

So who knows, we may be here a few more days, but it keeps us all a little more comfortable knowing he has good care here in the PICU. Keep up the prayers - we do appreciate them, and Braden certainly does. We will post any "new" news if we have any, but we may not for the next day or so, just waiting this virus out. We will let you know when we think we get to go home, hopefully later this week.

UPDATE: 10:00 am
Well, it's been a scary morning, as they have put Braden on the ventilator. (I have not posted a picture of him yet, just trying to stay busy attending to him for now). He just wasn't moving air through his lungs, and he stopped breathing. Luckily, the residents and docs were preparing to do rounds, so we had about 10 nurses, doctors, and residents all in our bay working on him to get him stabilized on the vent. (I think it's Braden's personal favorite pleasure to send all of them scrambling to keep them on their toes, as this is not the first time he has done something like this... almost ready to go home, then "surprise"!) After nearly 2 hours on the vent, he FINALLY has stabilized and they have had to sedate him to keep him comfortable - some of you know how much he HATES to be intubated.

Maybe this is happening so we can do some elective procedures we've talked about for awhile now, a bronchoscope and a muscle biopsy. Maybe if he does better in a day or two those will be scheduled. Perhaps God's plan is for us to do the biopsy and get the finality in answers and completely exhaust the syndrome/genetic possibility that whatever happened to him is in fact genetic in some way. Right now we are only looking at a 1 - 2% chance, but a biopsy could close the door on those questions, or finally provide some, should Braden have something happening on a mitochondrial or metabolic level.

Keep the prayers coming, I am claiming that my fighter of a son, Braden, will be OK, we just have to get over this hiccup. Thanks for sending your love, and well-wishes.
The Wilson's

Hospital News

2008-08-11T14:13:00.003-05:00

Well we have taken some strides towards getting better... late yesterday we took Braden off the CPAP and put him back on a nasal canula for O2. He has given us more "blue episodes" than what is normal, but he still is not back to his normal self. We are on a rigorous treatment regimen of nebulized medications, the vest, and the cough assist to get all of this stuff that's in his sinuses out, because he can't blow his nose like you or I. I think Braden, mommy and daddy all have the same nasty head cold.

His whine/cry is still pretty pitiful, telling me he's not yet ready to go, as he is lethargic. He hasn't had much awake time since we've gone in to the hospital. We have more specialist doctor consults today, so hopefully we will have a better game plan.

Not sure if we will get to go home tonight or not, I think we are looking at one more day given the level of oxygen he's requiring to keep his sats up.

We would have been at the balloon festival this weekend, but the hospital is not far from there, and we got to see the balloons right out of our window from the hospital, so instead of the crowd and fanfare version, we got our own private little viewing right from our bay in the PICU.

You can see he is resting better, and he has a chorus of angels looking over him. The angel overlooking the children on his blanket was my grandmother's, so it's kind of like she gets to watch over him too:-) We know he has good care here, and that many people are praying for him, we thank you for your continued prayers as Braden continues to gather strength.

Thanks and love,
The Wilson's

Back in the Hospital

2008-08-09T06:33:00.004-05:00

Braden has had a very rough week, and not surprisingly, since mommy and daddy have intermittently been fighting off allergies and sinus issues the past week too. He has required around the clock care, not leaving much sleep for anyone.

Yesterday afternoon he was requiring day-long oxygen at a high setting, was working extra hard to breathe with deep retractions and recovery breaths. After two days of him not responding with enough energy to muster a cough on his own, and general lethargy, we thought it was time to bring him in, as a fever spike was the last straw.

Last night we were admitted to the floor, as chest x-rays and labs were inconclusive. About 3:00 am this morning, he started in again on the labored breathing, and threw the floor staff a "blue episode". They bagged him (used the manual rescue breathing bag you've seen on all hospital shows) to bring his O2 sats back up (oxygen saturation). This episode made the floor crew a little uncomfortable (mind you, not out of the normal for us, though, especially when we don't feel good), so we have been moved to the PICU, our normal "hang out" at Our Lady of the Lake.

Right now we are trying everything to keep him off of the ventilator, but if he doesn't improve, that's where we are headed. They took a blood gas which showed his Carbon Dioxide up around the 200 level which is sky-high and means he is not moving enough oxygen well, as normal range would be 20 - 35, and a high reading would be 100. The only reason we are not ventilated right now, is our history with difficulty coming OFF the vent. The doctor (who is familiar with our case) said that if it were anybody else, we'd already be on the vent. Some great quick-thinking by our PICU nurse who had only seen him for about 45 minutes, suggested we put him on CPAP, and that's the machine you see in the picture. Now Braden and Papa Tom have a machine in common, since Papa Tom sleeps with a CPAP machine at night.

Update: 7 am
Blood gases came back MUCH closer to normal (the carbon dioxide & PH together confirmed improvement in his condition), so the CPAP is working!!! :-) (this means we can stay off the ventilator for now).

The other picture is of another version of "the vest" therapy, this one is the hospital's, it's a little bit different than ours so I thought I would share.

Please pray that Braden shows quick improvement, and that we will get to bring him home quickly. We will update when we have NEW news to share, but sometimes in the hospital, it could be a day or two before change comes.

Our love to you & yours,
The Wilson's

Big Boy

2008-08-02T22:39:00.006-05:00

Well this has been a busy week for Braden. We finally decided to turn his car seat to face forward, as his legs are much too long now and he can push against the seat. Earlier this week even Latacia mentioned just how long Braden is getting these days. So now he has a whole new world to look at!

We continue to join the Saturday swim class, every week is a new adventure, because we never know what Braden will do in class. This week he was wide-eyed and awake the whole class. He donned the new patriotic swim trunks the Heckerts brought back for him from their convention trip to Ohio. Braden was showing Jackson how easy it is to float when you relax.

We saw a rainbow on the way to work the other day, so we thought we would share it with you.

Stay tuned for more Braden and family adventures,
The Wilsons

Weather Photo

2008-07-25T21:15:00.003-05:00

Well, Daddy got play single dad the past few weeks while mommy was in Chicago for an advisory board and hosting workshops in management and sales. Meanwhile, on the in between mommy got to spend time with old friends, and even managed to see "Wicked".

We wanted to share some weather photos we took while on our trip to Kansas. The sky just opened up and it poured while we were traveling through Oklahoma, it looked so neat we just had to get a picture of it.

We are ready for our last two weeks of swim class, and awaiting the arrival of Braden's seating unit - it's finally ordered and on it's way from Sweden. We will post a million pictures once we have Braden in it!! The weather has taken its toll on us all, so we are just trying to manage the overbearing heat and lots of rain.

Braden also got a new cousin this week, Carter Nicholas Wilson was born Monday evening to happy parents, Aunt Jenny and Uncle Brian. He's a little guy, was only 7.2 ounces. So now Nana and Grandpa Wilson will have a house full of baby boys to spoil this coming holiday season... Braden, Tristen, and Carter will have lots of good times when they all finally get to meet each other!

More fun and updates to come, thanks for checking on us!

Trip to KS for 4th of July

2008-07-09T15:23:00.003-05:00

Well, it was an adventurous tour of KS for the Wilson's. We spent time in Ashland & Ford, KS with Kodi's family(near Dodge City), and then spent time in Wichita with Brad's Family.

We got to spend some quality time with cousin Paxton in her swimming pool, snuggling with Paxton and light-up monkey, hanging with cousin Peyton, and topping our time out West off with some snakes, sparklers, and smoke bombs. Paxton was so cute, when she spent the day with aunt Kodi, uncle Brad, and cousin Braden instead of going to daycare, she spent some QT holding Braden and ever-so-sweetly holding up the light-up monkey so Braden could gaze at it while she held him. She is so sweet with him.

We got to meet new cousin baby Tristen, who is just a squirmy-wormy delight. For a newborn, he is already trying to hold his head up and doing a good job of it, which came in handy when he was "wrestling" with Braden. Scott & Patty are making wonderful parents for Tristen, and have plans to marry next August!! The 3rd the family went to watch a fireworks display, that Braden seemed to enjoy as much as mommy:-)

Braden also hung out with uncle Brent, and uncle Brent made sure we left KS with a big bang... and on the 4th, Brent introduced Braden to artillery shells that made 50 ft showers over-head. Mommy stuck to the lighted fountains which Braden also seemed to enjoy as well. We cooked out and BBQ'd also on the 4th, ending our time in KS with the family in traditional style.

Mommy is headed out for nearly two weeks, so I am sure Braden and Daddy will have lots of special bonding time. We hope to share more stories soon.
The Wilson's

Aqua Tots Swim Class

2008-06-25T18:24:00.002-05:00

So this weekend we are headed to Kansas for vacation, so we are so excited to see our family and new cousin Tristen! Cousin Paxton is SO very excited to go swimming with Braden, it should be a blast. These are some pictures from our latest class. Braden is making friends, and so are mommy and daddy with more special needs parents. One of the things Braden and mommy do in the pool, is when he is in the floating devices, is he pushes against mommy with his feet as mommy pushes him away. Then we sway side to side and Braden will usually bend the opposite leg - but sometimes he finds it fun to fight mommy and push back keeping his leg straight. Of course, Braden is still a model floater, only needs the head support. Being in the water really relaxes him, so even if he is sleepy, we get good stretching in. The naps he takes after swim class are really long. Not sure if it's a combination of exhaustion or relaxation, but Braden really seems to enjoy being in the water.

Braden is doing new things all the time, subtle as they may be. He is doing better at lifting his head up from a tummy position, learning to put weight on his arms, and he is holding his head more mid-line when snuggling (instead of one side or the other, but this is a great progression!).

Thanks for checking on us, drop in again soon!
The Wilson's

Special Needs Swim Class

2008-06-13T21:20:00.003-05:00

Here are some pics from our first swim class. This is a class for special needs kids, and our first class was last Saturday. Of course the Heckert's are in the class with us, so we look forward to posting more pictures in the weeks to come. Braden is a chunky-monkey, as you know - and his whole body floats if you just hold his head. If we have to do stuff under the water, I actually have to push his body down in the water! :-) So cute.

We hope you all have a very enjoyable Father's Day weekend... it looks like our family will be welcoming a baby cousin for Braden this weekend. Uncle Scott and girlfriend Patty will be bringing Tristan Blake into the world this very weekend. Not only is it Scott's birthday, but will be his first Father's Day too:-)

A trip to the hospital

2008-05-27T09:30:00.006-05:00

Well, it had been some time for Braden to be absent from the hospital, but this trip was entirely different. For once, it wasn't a respiratory problem, but a G.I. problem. We found out that his stomach and bowels had been bleeding, only discovered after a session with his vest airway clearance system, and a dark brown discharge was coming from his G-tube site. I decided to check his residual (leftover stomach contents) and discovered they were a dark brown color, much different from the normal creamy-color of pediasure.

We took him to the ER and found he had blood in his stomach contents and stool, and so they admitted us. They believe he has a condition that will get better with time, either it is gastritus (just an irritation of the stomach lining) or gastroenteritis (inflammation and irritation of both the stomach and bowels). They put him on a regimen of fluids, milk of magnesia, and nexium. His out of the ordinary fussiness subsided some, so we believe the addition of these medications is helping.

Of course, we will keep his progress noted on this blog. Luckily, when we got to the ER, we saw our pulmonologist, who works the ER once in a blue moon, so he took care of us. We even got put into the room with froggies on the door, so we took it as a good omen.

We are back home now, and back to a routine. Please continue to keep Braden and his doctors in your prayers, so they find answers for quick healing. Thanks for the continued prayers,
The Wilsons