Hard To Keep Adjusting Hopes

I will write more tonight, but I just want to say that no matter how many times you make a plan, something will come up to force an adjustment. Jon had a hard day, partly because his hopes keep getting set aside. He still has this pneumonia which is probably what is causing fevers. Fevers keep them from proceeding to the next step (right now the next step is to feed him using an IV and get rid of the NG tube which is causing its own issues because he has low platelets).

Despite what the rest of my family feels, I think the medical teams are trying really hard to do no harm. Everything takes a lot of time, waiting for more information, weighing the risks. Jon is discouraged because the goal posts keep moving. He needs to be strong enough to take some of these risks. He is not in a good place for being patient and the rest of us need to help him not to feel defeated.

I am going back in to spend the night and I will have time to write more later.

****

9:48 in the hospital room. Jon watching several different sports at once. Right now he seems pretty comfortable, now that they have pulled that tube back out of his nose.

So when I got here this morning, Jon was as low as I have seen him in a very long time. He just didn't see that he was ever going to leave this place. Things were not moving in a good direction. But still he voluntarily went on a walk around the halls, doing what he needs to do in order to be allowed to go home. This morning we thought that there were a couple of goals to accomplish before he could be discharged -- get set up with a whole new system of delivering nutrition (through veins, not gut) and show that he was physically able to walk well enough to navigate our house.

A few set-backs: platelets very low, so a nosebleed became an unstoppable event. Not that it was scary, just that it was annoying to be bleeding.  Also, this fever that was controlled by Tylenol but was still showing that he still had pneumonia that was not gone yet. They need a 24 hour gap between fever and putting in a picc line, so the 2:00 appointment came and went, and the 9:00 appointment to start TPN also came and went. Instead they gave him peripheral nutrition, using a smaller vein.

It is hard when we think there is a plan, and it has times associated with it, and the plan is to go home on Friday. This seems much less likely now. 

I got to be here from 8 - 2 and it is amazing how quickly the time goes. It's like a constant show, watching the people come and go, taking blood, giving pills, changing sheets, bringing the inhaler, checking vital signs, delivering food, delivering updates. Jon really didn't sleep today. His energy is better even if he is still in bed most of the time.

Benjamin and Rebecca were here in the afternoon, R. stayed through the evening. Jon always says we don't have to be here so much, but I do think it raises his spirits. And tonight I am staying because last night he got more and more worried about all the possible outcomes, losing his optimism. We will see what happens tonight.

Too sleepy to think big thoughts. I got to pick some spinach this afternoon and I got to see Mika and Liana for a few minutes. Excellent medicine. 

Comments

  1. Bill SilvaOctober 9, 2025 at 3:31 PM

    Glad to get these updates, but sorry Jon’s progress is stalled…wishing all of you strength and resilience in the face of these challenges and sending much love and encouragement your way.

    ReplyDelete

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