3;54pm
Well, I get to be the asshole in the room again. I’d like to thank the UX field for 18 years of training…
Nathaniel is exhausted. He’s slept pretty much the whole time he’s been here. It’s not satisfying sleep. It’s “my body won’t let me stay awake” sleep. And it interferes with his care because whenever a doctor or PA comes in to talk about his care plan, he’s asleep.
Anyway, there was a rumor they were going to send him home tomorrow with orders to never miss a feed and also run the feeds a little longer so we can reverse the slide.
In other words, their care plan was “he has to force himself to try harder”.
i just did some forcing myself. I forced the nurse practitioner to face the fact that we the changes that have been suggested so far are not going to actually reverse his weight loss. I forced some discussion on whether he should even be on the transplant floor because the new liver is not the problem right now. I forced them to consider that Nathaniel has been managing his care since he was 13, he’s a highly motivated person who isn’t going to skip a treatment without a very good reason, and there are no damn bootstraps he can lift himself up on.
And honestly I’m being a little selfish in these conversations because the general assumption is that if he can’t take care of himself then I am going to be the one to pick up the slack. Which would be great except I’m already doing that. The next step in me getting involved would essentially make me a nurse 24/7 with no respite until Nathaniel recovered enough to go off the feeds, at which point he would “only” have to worry about his respiratory therapy, diabetes, and rebuilding his physical strength. And don’t get me wrong. I will stand by Nathaniel for every step. But I don’t think even if I became that super bitch nurse that forces everything to happen on time and perfectly that it would happen on time and perfectly. And we’d be back here anyway.
So I don’t know whats going to happen from here. Probably nothing today, since it’s Sunday. But it looks like I need to be here bright and early tomorrow morning to make sure we get the care he needs.