6:00pm
Day 50! One of my friends said “How can it be December already!?” earlier and I was like “No way, it is still October 12th, I am not buying any other nonsense.”
Nathaniel’s transplant team is starting to talk about his discharge from the hospital to an acute rehab facility. It’s not quite as good as going home, but it’s a good step in the right direction. There are, of course, some challenges to be overcome.
The first is that he can’t leave until at least December 4, because that’s how long his current IV anti-fungal will be running.
Similarly, his kidneys have to be behaving well enough for him to tolerate the prescriptions he’ll be taking outside of the hospital, and while they’re almost there, it’ll likely still be a few days.
More problematic is nutrition. Nathaniel is still on a feeding tube, and it’s working. (He’s gained four pounds this week!) But the team wants to see him eating (or drinking) a significant (as in “useful”) number of calories by mouth every day, so that they know he’ll be able to maintain his weight gain from home. Right now, that’s not happening.
One reason it’s not happening is because the anti-rejection meds he’s taking make everything taste weird. A quick poll of Reddit transplant patients reveals this is perfectly normal, annoying as hell, and does actually have the risk of slowing down his recovery because it’s hard to heal on no food. I’ve been picking up any and all of the comfort foods he’s eaten all our lives and bringing them into the hospital, and so far we have struck out on every one. I also mined the answer to my Reddit question for food that might be appealing, which is why he has two different variety packs of cereal, two variety packs of oatmeal, and a variety pack of crackers on his table, waiting for taste tests. (Fruit loops and Pops have already failed the test.)
Another reason, and this is totally me just bitching now, is because it is very difficult to get the Liver Transplant team, the nutrition team, the endocrinology team, and the CF team all on the same page about what Nathaniel’s allowed to eat and when. CF says as long as he is cleared to swallow it he can have it. Endo wants to avoid too much sugar for both diabetes and “do not feed the fungal infection” reasons. Nutrition wants to make sure he won’t choke on it, because there was a point in this set of shenanigans where he lost the ability to swallow and they haven’t cleared him to have actual food yet, and Liver would like him to eat low salt. Also Liver would like him to have left for rehab by now.
But the Rehab guy that came in earlier today says Nathaniel can’t be on the feeding tube to go to rehab (Transplant says he is wrong and I’m like “but HE is the one from rehab….”) And CF says Nathaniel needs a full salt diet, and/or as much sugar as he can get to bring his weight up. And nobody can tell me how many calories Nathaniel needs to be able to eat to go to Rehab (but they did finally tell me that Rehab will be helping him rehab the eating along with physical and occupational therapy). And while I am 100% sure I do not want to leave Nathaniel in the hospital even one minute longer than necessary, I am also very sure that I want him to be able to eat at whatever level is necessary before he leaves… when no one can agree what his calorie count needs to be or what it can be made up of, I get itchy.
Everything is in the course of coming together, though… this is just the face of modern medicine. (It’s not an American-specific thing either. Getting dozens of people all moving the same direction when each of them specializes in only one part of the trips, is hard no matter where you are.) The biggest difference between medicine and project management in IT, as far as I can tell, is that when medicine kills someone you know immediately, and when we screw up a project in the IT world badly enough to kill someone, half the time you can’t even prove it was our screw up that did it.