11:24am
You may be noticing that the updates are more sporadic right now. That’s because Nathaniel’s feeling good enough to be awake most of the time most days, which means I am spending time with him and not toying with the computer. (Right now he’s doing his very best impression of “patient determined to fall out of the bed by sleeping with his head on the side rail” so I’ve got a minute to type.)
According to Transplant, Nathaniel’s current level of malnourishment and ability to eat are literally the things keeping him in the hospital. He’s done dialysis and his kidney numbers continue to improve. He’s healing as fast as his body can regarding the liver surgery — and if he was someone without all his extra complications there’s a good chance he’d be at home right now, or at least in a hotel waiting for things to heal up. His lungs are behaving well (outside a pleuritic pain that we can’t quite explain yet) and his diabetes is well managed.
He’s also down about 20lbs from when he came into the hospital. Note: he was down 30lbs, so this is an improvement. But also, when he weighed 153 he still had a lot of edema (and he still has a lot of edema today at 160lbs) so not all of that weight counts as, y’know, weight, the stuff that your body uses as fuel when it needs to.
The man is straight up bony to hug.
But putting weight on is, honestly, harder than taking weight off, and I say that as a person who’s been obese since about age 25. Not-eating, while it makes you miserable and can really screw up your metabolism, doesn’t require your stomach to be big enough to not-eat. Nathaniel’s stomach, on the other hand, has had plenty of time to shrink and just doesn’t want to be filled with anything right now. Bonus points that an over-filled stomach presses on the new liver. Double bonus points that his dentures don’t fit properly so chewing hurts like hell. Triple bonus points that the meds make food taste weird so even his favorite foods taste bitter and awful right now.
The team asked Nathaniel to get to the point that (in addition to his tube feeds) he could drink three Boost Soothe drinks (300cal) per day, and he’s struggling to do that.
And of course there are insurance complications to all of this. The hospital would very much like to have their bed back. But Medicare often does rehab in the form of “you get as much as four weeks and the point is to make sure you can go home safely even if you haven’t recovered by then”. From their standpoint if you can’t walk by the time you leave rehab, at least you should’ve worked with PT and OT long enough that we’ll know you need a wheelchair when you get to the house. The goal isn’t to fix you, the goal is to make you safe to go home.
The rehab center does nutritional rehabilitation as well, but they have baseline levels of eating that Nathaniel just isn’t hitting yet. If the hospital were to release Nathaniel to rehab before he’s eating well enough to rehab, then when he was done rehab they’d just end up readmitting him.
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4:39pm
Nathaniel’s walking around really well but gets winded pretty quickly. I’ve been spending the day yelling at billing departments who call even when the bills are covered.