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

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

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

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!!!!

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

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

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?

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

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

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

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

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

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

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

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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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:-(

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!!

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

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

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