Sunday, August 31, 2008

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!!

Thursday, August 28, 2008

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

Friday, August 22, 2008

We're home!!!

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

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

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

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

Tuesday, August 19, 2008

Trying to get over the "hump"

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

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

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

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

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

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

Sunday, August 17, 2008

Rollercoaster day

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

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

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

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

Keep the faith!!
The Wilsons

Saturday, August 16, 2008

Off the ventilator, course throat

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

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

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

Friday, August 15, 2008

OK, one MORE day on the ventilator

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

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

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

Thursday, August 14, 2008

Still on life support, but things look good

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

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

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

Thanks for the prayers & support,
The Wilsons

Wednesday, August 13, 2008

On the vent, but comfortable

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

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

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

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

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

Tuesday, August 12, 2008

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

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

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

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

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

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

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

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

Monday, August 11, 2008

Hospital News

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

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

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

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

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

Thanks and love,
The Wilson's

Saturday, August 09, 2008

Back in the Hospital

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

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

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

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

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

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

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

Our love to you & yours,
The Wilson's

Saturday, August 02, 2008

Big Boy

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

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

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

Stay tuned for more Braden and family adventures,
The Wilsons