We’re still at the rehab hospital, but making progress. Nicholas is starting to develop a routine, which is a pretty good thing in my opinion. He gets cranky at about 4:30 PM, and that lasts until about 6:30 or 7:00. Once he levels off, he’s a pretty happy guy. He’s been going down for the evening between 8:00 and 9:00, and the nurses have been telling us he sleeps pretty well. We’ve been going home at night, so that we can try to get some rest. Some nights are better than others, but it still beats trying to stay at the rehab. It’s not really feasible to stay there anyway.
Mom and Dad have made some progress too – we did our first two-person trach change on Friday evening. To be honest, it was a lot scarier thinking about it than actually doing it. It ended up being not that big of a deal. I took the old one out, Cathy put the new one in, and it took all of about 15 seconds to do it. The hardest part is getting the velcro collar fastened behind his neck, rather than changing the tube. We’ve also been working on our other “check-off” items (CPR, suctioning, medications, etc), and that is going pretty well.
This week continues our work on his swallow (and other various exercises). It’s frustrating as hell not being able to feed him as much as he wants through the bottle, but the thought of having him go back to the PICU with aspiration pneumonia (which would be the result of letting him chug his meals) helps keep that frustration in check. That would be starting over, and I am not very anxious to do that. So until he’s ready, he gets 4 bottle feeds a day, and the rest of his nutrition is going through the continuous feed/NG tube. He is gaining some weight (finally) – he had the beginnings of chubby cheeks, which is actually a first.
So we continue the daily grind, with the daily hope that we are one step closer to being home.