3:52pm
I haven’t done an update over the weekend because the weekend consisted of “drink fluids”.
Monday we were told the team would swing by and tell us what’s going on and they just… didn’t.
Today was “anne pitches a fit” day. I read the resident the riot act about the lack of communication and the fact that some communicators were bypassing me, telling Nathaniel, and then he was getting his wires crossed and telling me incorrect information. Does not fly with me. When I was done with the resident I had a strongly worded conversation with the nurse coordinator about a pile of small but risky things happening with the nursing staff that needed to stop.
It helps that I was starving at the time.
Nathaniel is currently getting a paracentesis — they’re taking fluid out of his abdomen. To my knowledge he gets to rest the rest of the day, which is good because there were problems with the night nurse not knowing how his feeding tube worked that kept him up all night. (See previous “I chewed out the nurse coordinator”)
(And if any of you are worried about my temper, please be assured that I turned on my very best “Vanguard Talking to An Executive” self and everything I said was also surrounded by honest compliments to the staff and the hospital. This place has saved his life. They just also have to not break the feeding tube.)
Nathaniel is officially in the process of being evaluated for transplant. I have an entire folder of documents describing what this means so if you want more details tell me. It will probably be a little while before he has a final answer and in the meantime we have to ensure he stays alive and as healthy as possible. He is doing physical therapy, which helps, and drinking shakes from Wawa… if they can figure out what’s going on with the colon scan he’ll be able to switch back to real food right after the scan. He had an echocardiogram / heart ultrasound this morning. He’s got a heart stress test tomorrow. If there are other tests coming and there most certainly are, we just don’t know what they are yet. (See previous “chewed out the resident”).
Also, I honestly don’t know if it’s true but Nathaniel told me this morning that one of the doctors (he couldn’t say which one) told him he didn’t qualify for a living donor transplant. I’m telling all of you this because I know some of you are hoping that living donor is an option and I want to make sure you know right now that it may not be. Which is scary. But also this is the same man who told me this morning that “they want me to do a stress test which is a dry run of what the hospital will do when i come in for the transplant” and I was like “my good dude I had a stress test in march I assure you that is not what it is”. So don’t put your hopes on a living donor — but don’t rule it out 100% until I verify it.
I’m going out to dinner with a friend this evening and then crashing at the hotel again tonight. I had to relocate at 1am yesterday because my newly-renovated room’s door had just enough of a gap around it that every time the heating system turned on and blew air into the room, the door hummed like a jet engine. So that was fun. But they did give me a box of chocolates for being a Silver Elite member and with Nathaniel’s health being what it is Marriott might just make me a Lifetime Gold Elite member this calendar year because I’ll have 400 nights in marriott properties, courtesy of lots of work trips and a love for Virginia Beach.
Nathaniel’s parents are at our house because it’s much closer than Kutztown and Nathaniel’s brother is driving in from South Dakota, arriving very late tonight. I’ve got permission now to spread the word to friends and acquaintances on what the hell is going on, so communication will soon be more of a challenge. I don’t really want to set up a Caringbridge website but it might come to that for my sanity. Similarly, I don’t really want to set up a gofundme for fundraising, but that’s a conversation that I’ll be having with the transplant coordinators.
Anyway, this update is long enough. We’re still here. His numbers are not good but he’s still kicking (and screaming) to get what he needs. As long as he’s fighting, I’m fighting.
Open roads and kind fires, friends. We’ll get through this.