Winter update

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!

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

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

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

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

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

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

By Parenting

Vote for us??

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

"How is Braden?"

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

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!!

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

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

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

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!

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

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

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

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

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

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

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