Long Day

Well, all days are the same length but some days do feel longer. I think a general lack of progress makes everything feel slower. Jon is still feeling bad, he is just in a different bed with a different team paying attention.

Last night they determined that he has RSV. Who knows how or where he got it. There are no obvious sources. The CT scan, according to the Infection Diseases doctor, is a classic example of viral pneumonia. RSV has no proven antidote. There is one drug that might work, might not but they use it at times like this because they don't have any better ideas. Jon had RSV once before and got pneumonia in 2021(that was the year that he was getting ready to drive to NC to pick up Christmas trees, and had to be redirected when he was clearly too sick... that was the last year we sold trees) and they gave him the drug and he is still here, so that's one piece of unscientific evidence that it works. Ribavirin.

The various teams came through to say hello, ask questions, give information. The attending told him about the drug that may or may not be helpful. The social worker tried to determine whether Jon has a safe home to return to, and she asked me if we need a work note. Everyone is all double masked and wrapped in plastic so I couldn't really understand her, so I asked her to repeat the question. She was asking if I needed a note for my employer or for Jon's. Oh, no thank you. I can write him a note.

The question of decisions around a DNR or intubation came up, and at this moment, Alissa is on the phone with Jon reminding him of the importance of being clear about what you want so others can know what your wishes are. She says the circumstances change, and that he is now trying to find out whether the CAR-T cells worked so this is a good time for discussion. She says it's a question of whether Jon would be willing to do rehab after ending up in an ICU. This is all in Alissa's realm of experience by now and she has a lot to say.  The Physician Assistant wanted us to clarify all of this so they know what to do, in case. But they all say we can change his "code status" at any time. Alissa says there are a lot of different things to think about with intubation, but she recommends against CPR if his heart should stop.

All of this is not to say that anyone expects Jon to die soon. He is certainly disheartened by this pneumonia. He isn't really worrying about the CAR-T anymore. It's funny how the priorities keep changing. But now he is back to having food be a source of upset -- it makes him feel worse when he eats and he really does not want to eat. And this coughing is making him so miserable.

We have known for 24 hours that he has pneumonia. They came up with a plan today, as uncertain as it is. We all know that Jon is seriously immunocompromised. We have to give him some time to get better. He  hates being in the hospital, he hates feeling lousy, and he has a hard time seeing a time when things will be different. I know that I have not been sick for the last 16 years (he forgets how many of those years have been healthy) and I know that I have a track record of really crazy good health (except for that week when I did have cancer) so I am not in a place to really understand what it feels like to be Jon. But I have seen this before, and I think it is a good thing that he has such a bad memory. We have to get through this so he can forget about the details.

He got a transfusion of red blood cells and he got his antibiotics that we have been doing at home but now that's out of my hands and he is on oxygen. All in all, it is clear that the NP yesterday made the right call. If only Jon were not so unhappy to be here. It reminds him of all the other times, and that's yucky.

Rebecca sends lots of pictures of Thalia to make us smile, and we show them to the nurses so they can have a smile too. And you.