7:04pm
I have concluded that there’s no good way to take a photo of the amazing view we get of the city skyline from here because there’s always a window or a bathroom wall or some other reflection on the glass. I know from pinball that non-reflective glass is as expensive as hell, and it might not be as safe as the glass on these windows, so I’m not mad. It is sad though.
Matt and Beck came to visit again and that made Nathaniel very happy. Video games of many types were played and pinball stories swapped. It’s a good way to spend an afternoon and they are great people.
Meanwhile, I have declared “war” on the hospital’s inability to do anything about Nathaniel’s denture situation. His current dentures do not fit correctly. We knew that before we came in and, in fact, he was supposed to have appointments with two different specialists in october to see if he could get a full mouth of implants instead of the constant battle with dentures.
Then his liver decided to try to kill him and I canceled the appointments.
(There was a point when I thought Nathaniel was going to die where the darkest part of me thought “well at least we won’t have to pay for implants” because sometimes the human brain will do absolutely anything it can to squeeze a little dopamine out of an all-adrenaline situation.)
(I don’t think dopamine and adrenaline are friends.)
(Then again I had no idea how much of a bastard the pituitary gland is before any of this started so hey, shows what I know.)
Nathaniel and I have discussed the denture situation with various members of the hospital staff and each time we get the same answer: you can’t get help from the dentists in the HUP system unless you’re outpatient, but to get outpatient you have to be healthy enough to eat your food… which is much more difficult when you don’t have working teeth. Bonus points for the two different docs who have said “yeah we know that the pureed food diet is boring and bland but you can gain weight on that so you can get out and get your teeth checked”.
Yeah, no.
It took me three weeks of softly pushing to get a refrigerator in Nathaniel’s room so that his shakes were cold and he didn’t need to ask a nurse to go fetch one for him. (All the CF patients on the CF floor have fridges in their rooms but because Nathaniel’s not on the CF floor, he’s on the liver transplant floor, he didn’t get a fridge and he was told it’s “not floor policy” for him to have one.
I’ve learned that a lot of the time “not floor policy” either means “we don’t know who to ask” or “we don’t feel like asking”.
A few days ago we asked again and this time the (amazing) charge nurse Cece knew who to ask — the floor secretary, who also knew who to ask, and we had a fridge in a matter of hours.
Now, maybe I’ll succeed in finding someone in the HUP system to fix Nathaniel’s teeth or maybe I won’t. And I’m not afraid to start calling dentists and saying “hey can you come visit him in his hospital room?” until I find someone who will do the work. I’m not paying for dental insurance to sit around and not-use it when it’s desperately needed.
But “it’s not policy” doesn’t mean you can’t do it, and i’m not taking it as an answer. I’ve written too many policies. Hell, my motto at Vanguard was “be the first person to write it down so you get the policy you want”.
(That was a frisky little rant.)
His liver is working well and his kidneys are recovering nicely. He’s up and walking (but still having trouble with the “getting up” part) at least as far as the bathroom and back. He kicked my ass in the last hand of a game of rummy earlier, which makes me very happy because it means his brain is working well. Like everyone in his very uncomfortable position, he’s stiff and sore and his tailbone is very unhappy about being in a bed for the last 55 days. But the biggest thing holding him up is his weight and strength and solving the teeth thing feels like the right direction to move to fix it. Or at least the only direction I personally feel I could exert some influence over.
***
11:06pm
I think I forgot to tell everyone — Nathaniel got his hair cut!. He didn’t cut it as far as I thought he was going to (but then again he was a bit “confused” when he told me he was going to cut it back to the short cut he had in college). I’m planning to post the pics but I want to get his permission first since he is in a hospital gown in them.