Physically, Nathaniel is making great progress. His liver is working as expected and his blood tests are starting to show much better numbers. His lungs look good, his incisions are healing well, and while his kidneys are still running on dialysis, the nephrologists assure me that it’s normal for a person whose kidneys were almost on dialysis due to the liver problems in the first place.
Mentally, he’s struggling with a lot of anxiety. Like “keeps thinking he can’t breathe” levels of anxiety. “panic every time the door is left open” kinds of anxiety”. “keep anne awake half the night” kinds of anxiety. Most of it appears to be centered around his breathing, which is ironic because going into the transplant his lungs were arguably tied with his heart for the healthiest part of his body award.
As we learned back on October 16th, 20-30% of patients in the ICU experience delusions, so it’s no big surprise that Nathaniel might not always be able to say where he is or what he’s doing. It’s a little more of a surprise that he’s been panicked this long because he’s afraid to cough or even breathe. We’re consulting with all the right people, but it takes time… time for them to come to his room and time for plans to be made, and time for those plans to work.
In the meantime, I’m doing my best to try to nudge the right people into the right solutions without really knowing what “right” looks like right now and then hoping that things feel better.
***
4:46pm
I took a nap, and not I’m such a spiky person.
We booked a Residence Inn through the end of December. We’ll be down at HUP at least that long based on everything the doctors have said. Since we’re booking such a long stay, the price is much more reasonable than I expected, and since as the weather gets colder I’ll stop walking everywhere anyway, it seems like a good plan.
Psychiatry swung by and had a good talk with Nathaniel about his anxiety and what needs to be done to get it back under control, and they’ve built a plan together. So that’s good! That means we might sleep tonight!
Some updated x-rays show Nathaniel’s lungs aren’t 100% clear the way they were before his transplant… also not unusual, but a good reason to do respiratory therapy stuff. The tricky part will be motivating the highly anxious person to do the respiratory therapy stuff. I will likely lose at this battle, at least tonight.
This is your obligatory reminder to take care of yourself, because the better shape you’re in when a disaster strikes, the easier it is to handle. And at a more granular level, don’t forget to eat, sleep, and shower.
So glad you are so well informed and handling all that comes at you. Prayers & hugs continue .🙏🏻❤️
Sorry to hear Nat. Is having issues I am assuming that if I went through the wringer and still was alive coming out the other side
I might have some issues too !
💖
That is so much to navigate. You are doing such an amazing job at coordinating his care and keeping us all updated. I hope you are leaving some room for rest and recovery for yourself.