Monday, September 29, 2008

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"

Saturday, September 27, 2008

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

Thursday, September 18, 2008

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

Sunday, September 14, 2008

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

Thursday, September 11, 2008

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 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!

Monday, September 08, 2008

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

Saturday, September 06, 2008

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

Thursday, September 04, 2008

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:

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.