Chugging along

Nothing much has changed really.

I’m happy to know that at least two of Samuel’s primary nurses have followed him to his new room. I was really worried about that simply because he has such a long history and I’d hope his caretakers would know him and know his history.

This weekend he had a little blip. Friday night he didn’t seem himself, his blood gas came back a bit worrisome. Saturday he was even more grumpy, his CRP was elevated, his platelets down. He got a full blood workup. By today, his platelets had come back up, the blood work looked more normal for him. We’re still trying to wean him off the vent, but he seems to protest it. We haven’t gotten to the point yet where decadron is being mentioned, but if he doesn’t respond well over the next few days, we may have to start those treatments.

Sam’s weight today is 2 pounds 5 ounces. Sebastien’s is 4 pounds 3 ounces.

Sebastien is still doing the same. They’re working with him now on sitting upright and sucking on a pacifier without desats. He’ll need to be able to do this to sit in a car seat, to bottle feed, etc. At first he would have spells, but they’ve become fewer and fewer. When I was holding him today, I worked with his pacifier, trying to get him to suck and hold it himself, to build up those cheek muscles.

I talked to the doctor on duty this weekend about bottle feeding and CPAP, when we could get him off. She had a wonderful description for what would happen if Sebastien tried to bottle feed while on CPAP or if on the cannula at too high of a pressure: imagine sticking your head out the window of a car, going 60 mph down the highway, and trying to drink something through a straw. That image made me laugh, she said it was an apt description for what he’d experience. Ok, so yeah, gotta hold of on po feeds till he’s more ready for it.

I also asked her about the PDA, about the medicines used to close it. The medicine really only works in their first 3 weeks max of life. She’s doubts it would work now; she’s actually not sure what they’re going to do about it. The PDA isn’t causing him any real issues (except that they’re hesitant to wean him off the CPAP), but they don’t know if it will cause issues later. I hate all the uncertainty.


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