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

Surgery Successful, Hurricane IKE Looms

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

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

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

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

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

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

Gustav Aftermath - Saturday update

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

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

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

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

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

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

Gustav Aftermath - Thursday night update

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

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

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

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

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

Will post more this weekend.

Gustav Aftermath - Tuesday night update

LSU Rec Center portion of roof
The new "skylight"




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

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

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

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

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

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

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

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

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

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

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

We are "hunkered down" at the Rec at LSU

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

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

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

Bracing for Gustav

Sleep Study Photo


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

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

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

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

The Wilson's