Another short update this evening, as everything is going great with Ambrose in general. He is still off all morphine and sedatives, and tomorrow is his last day of antibiotics. I don’t think I ever wrote about the experimental dose he got of the drug darbepoetin. It’s already FDA approved as a treatment for anemia in cancer patients, but is about to undergo trials in infants. Basically, the idea is that it protected his brain after the trauma he went through. (I think! Don’t quote me on that!) When he got it — two or three days after arriving here — things were very desperate, so it was a bit of a “why not?” situation. Anyway, he’ll get one more dose of that as well. And then we should be drug free!
Except for one thing — the poor kid is going through morphine withdrawal. He hasn’t had a dose of it in two days, and now things are starting to show up. His nurse this evening showed me the criteria they’re looking out for before they’ll give him another preventative dose: he’s running a bit of a temperature, he’s easy to startle, and he’s yawning. (Yes, apparently that’s a sign of withdrawal.) There are definitely things he’s not showing — diarrhea, increased muscle tone, inconsolable crying, etc. So for now we’re letting him suffer through the DT’s, and hoping that things don’t get worse for him.
Another mildly sad development (don’t worry, it’s really nothing to fret over): the kid’s PICC line was inserted in a sort of dumb spot, right where his elbow bends. He likes to bend his elbow, but to keep it from kinking, he has to keep the arm straight. We don’t want to insert yet another PICC line, so they’ve put him in a sort of cast thing to force him to keep it unkinked. Poor guy! I don’t think I say that enough 😉
But anyway, the biggest news: neurology! The neurologist stopped by during rounds today and gave her report, which was, essentially: the MRI looked great, Ambrose is doing fine. She did warn us that developmental delays show in around 25% of kids like him, yada yada, but come on. Our little buddy is doing great. She checked his reflexes while I was holding him, and everything looked great. We are in the clear!
Best development of today: skin to skin! I’d considered asking about it, but I wasn’t sure how it would work with all the wires and things, plus most of my shirts are tight and not conducive to holding a baby underneath. But the nurse suggested it this morning, and the doctor affirmed that it was a really great idea, so they set me up with a hospital gown and I got to spend a really nice chunk of time with a naked baby on my chest. Hooray! It was the greatest thing. He spent some of the time exercising his neck, and some of the time sleeping, while I read Hamlet (No Fear Shakespeare version) to him. That said, the chair they had me set up in was immensely uncomfortable. But that’s just sort of the downside of being in a hospital. We’ll bust out of here before we know it!