Breathing

I like the new PICU attending on service. She is taking a very hands on approach to Jaisal's care and is very focused on getting us out of here. With the little setback after the sedation from the liver biopsy, I think we're all fairly certain that Jaisal is going to leave the hospital on some form of breathing support. The new goal is to get him using cpap (a breathing mask that covers only his nose, as opposed to the bipap that covers his nose and mouth) at night, in the hopes that provides him enough recovery time to breathe room air (no breathing support) during the day.

The wheels have been set in motion to see if our insurance has coverage for at home cpap care (why it wouldn't I'm not sure, because it has to be cheaper than PICU care). I've heard that getting that whole process set up will take 3-7 days, which hopefully will be enough time for Jaisal to get strong enough to go without daytime oxygen/breathing support.  Dr. W supports this plan and does not think we will need to go to the floor (6W, our hospital home) before discharge.

Before I left work for this surgery, I told my colleagues that we were hopeful that Jaisal would be out of the hospital in 2 weeks but were planning for a month. If we manage to get out in the next week, we'll still make it within that month deadline. Lots of hope that this comes true, since EVERY SINGLE person that comes to our room comments on how good Jaisal looks. I love hearing it, but it also sucks that he seems so well but we can't seem to round a corner on these breathing issues. The best/worst is when people ask why he's still here (in the PICU). All I can say is that he likes all the attention he's getting. I keep promising Jaisal lots of attention at home and even more toys (the kid seriously has insane amounts of toys in the hospital), but it just does not seem to be adequate motivation to get the breathing issues sorted out.

We're not sure what the plan will be once we're at home, but I imagine if two or three months after we get home Jaisal still hasn't really improved, we'll more seriously start talking about surgical options to address his paralyzed diaphragm. We'll cross that bridge when we reach it.