Grumpiness Increasing

We are choosing to take it as a good sign that the grumpiness is coming back. For a few days, Jon has been too weak to be his usual self, but now he has the capacity to be quite impatient and grouchy -- maybe this nutrition and electrolyte regime is starting to make his brain work again. Alissa says nutrients go first to the brain, so this is make sense.

I know that I tend to over-report, so I will return to my past practice of giving an Executive Summary for those who just need to know the basics, and then I will write whatever I want to for those who have time for the commentary. I hope this blog can be de-activated again by the end of the week, and I am grateful to all who have checked in, sent their love and prayers, and continue to follow the story. It has been a long 16 years...

The Summary
Yesterday they increased the rate of nutrient delivery (through a tube in his nose, delivering to his stomach), but now I can't remember what the number is. Anyway, he is tolerating it. He also has to drink an occasional potion of potassium and other powders to make sure that this doesn't backfire. Apparently, a body can turn on itself and reject everything if things are not done at a careful pace. Malnutrition takes a while to repair.

There is talk of keeping him there until they install a G-tube, directly from the outside of his belly into his stomach. This way we wouldn't need to worry about causing aspiration and he doesn't have to have a tube coming out of his nose. This is something we suggested a long time ago, and now it is making sense to others.

Jon is not tracking everything as well as he ordinarily does. He is paying attention but not everything is sticking in his memory. Yesterday he refused to do PT repeatedly, which is not acceptable, and he needs to get out of bed and walk. Today someone will make that happen.

He appears to be on a good trajectory. Progress is slow, but certainly it is progress. He doesn't see it.

Additional Stuff, Totally Optional 

We know that he isn't remembering everything, and it surprises us because he usually has a good short term memory.  But last night he couldn't recall that all three of the kids and I were there on Saturday evening. Just couldn't picture all of us.

When I asked him if he wanted any visitors, and who would they be, he frowned, tried to think. He had already agreed to a visit from Rabbi Holzman, and they did have a visit, and he could report to me what that was like. He said that he only wanted family, and he let the rabbi come because he respected him so much and appreciated all that he does. So, except for the rabbi, he wants to limit his visitors to just family for now. 

This is probably partly because of course he can be his real, impatient self with us. No need for good behavior. I have seen an occasional smile but mostly that is one frowny face. He doesn't really see the need to be patient with the nursing staff, even though they are undoubtedly doing their best. On occasion, it has taken a long time to get anyone to answer when he pushes the button, and this is especially annoying if there is an alarm going off because something is kinked or not working. Last night we had to put up with that alarm for 45 minutes because of a mix-up (the tech came in, saw that she couldn't fix the problem, turned off the nurse call button, said she would tell someone, forgot to do that...). Oh, Jon was pissed. He did not swear at anyone, thank goodness, but he kept saying "45 MINUTES" in a loud, angry way when the nurse finally came to fix things. Most of us can well imagine this. She told him he could have pushed the button, and of course that didn't go well.

Alissa will be there today to talk to the doctor before he rotates off, and they are going to talk about the G-tube. She has concerns that come from her experience in pediatric oncology, and she knows that adults are different, so she needs to hear why these risks seem fine for adults. She worries that Jon is not in a good enough state to heal well and that his wound would get infected. She worries about the pneumonia that he has (getting antibiotics) and thinks that should be cleared up before they do this procedure. She conferred with a fellow doctor friend who treats adults, and this doctor assured her that this was safe and normal, to go forward. 

It is easy to think that we are out of the woods, but we are not. There are plenty of things that could still go wrong. But it is encouraging to be in a much better place than we were on Saturday morning when it felt truly dire. Jon doesn't see that things are better, but he never does. He is an all or nothing sort of person when it comes to things like this. He is not well enough to get up and go home and start doing things, so he is just as bad as ever. The rest of us know this is not the case. 

Rebecca is working from the hospital room today. Alissa will be there for some of the day, and I will probably go see him in the late afternoon. Today I am not going to Loudoun even though that is my Monday routine. I am staying home, clearing the table, finishing my book for book club, wearing clean clothes, trying to re-group. As usual, it was a busy weekend with lots of vegetables to move around and problems to solve. We are having a great fall and we have superb workers, so the farm is not a worry. It is my saving grace, having this work. Picking beans continues to be the best therapy, especially when they are gorgeous.

Yesterday Benjamin and Michael put up the sukkah at the temple, something that has been Jon's job for the last 30 years or so. Many times he has put it up himself but in recent years he has had help. This time he helped Benjamin get the materials to the temple last week and Benj took it from there. 

Always grateful for all the ways that people help to keep things going. Thank you to all who are following this, thank you for all of your loving wishes.