4:47pm
I thought I was going to have to start this post with the bad news that Nathaniel wasn’t being discharged on the 27th and they’d pushed it back to the 30th.
The reason they needed to push back, they explained, was that they can’t get all his tube feed supplies put together by the 27th due to the holidays and people taking time off etc.
Nathaniel replied “then I guess I will just have to drink boosts [the nestle high calorie shakes] until you can deliver the supplies” and stuck to that position with such stubborn ferocity that, well, that’s what we’re doing.
It probably didn’t help that I sent a sternly worded reminder to the transplant coordinator that this is”team Nathaniel” and not “team we-make-decisions-without-Nathaniel” and that a change was required. A few minutes after that was the meeting with the doctors, who up until that point had sent literally everyone but themselves in to discuss changes etc.
You can take this as a lesson in standing up for yourself at medical appointments if you wish — more people do need to learn to advocate for themselves. But if you do, also take it as a reminder that if you know your shit then you earn a place at the table with the doctors, and if you are a danger to yourself then people will make decisions without you. Nathaniel and I didn’t win the argument because we were stubborn, though that didn’t hurt. We won it because for every objection that the docs could come up with — knowing how to use the tube feeding, knowing how to adjust his insulin levels, being able to do his activities of daily living, etc. — we could prove that one or the other of us already knows it inside out and backwards, and generally it was the patient with the knowledge.
Advocacy is really proving to the doctors that you know your shit.
Nathaniel is currently enjoying a cup of hot coca and an IV bag of iron, and I am working on figuring out which items in the room can be taken out of the room today so that I don’t have to try to pack the whole room on Saturday. (Tomorrow I will do more of the same, since Friday I will be in Lancaster celebrating Christmas with the Kent clan.) It’s a better ending than I expected.
Possible updates to come, keep an eye open.
***
9:40pm
Well, we’re packing up parts of the room and bringing them back, so this is actually happening. Merry Christmas everyone!
Merry Christmas Anne & Nathaniel!
Merry Christmas from Clermont FL. Anne, you are such a great advocate. Everyone would be lucky to have you on their side. I’ve put you up on the advocate’s hall of fame with your Aunt Madge.
Have a wonderful day with the family tomorrow. We’re looking forward to FaceTime with you.