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