Not A Lot of News

Alissa went back to NY today, Benjamin spent a good part of the day in the room with Jon, and Rebecca came in during the afternoon. I watched the WhatsApp conversation between the three of them while I worked all day. 

They turned off his nutrition delivery, anticipating that he would have a G tube put in. But then the Interventional Radiology report said that there was not a path to putting in a G tube because he has organs in the way, somehow. The only way to get one installed is surgically, working from the inside. Meanwhile, they didn't turn the "feed" back on until mid-afternoon. Benjamin had to get someone to pay attention.

 Late in the day, Rebecca reported, "surgery just walked in." They came to tell Jon that they don't recommend surgery at this point, while he is so compromised and weak. They would like to wait a few weeks until he is clear of this pneumonia (did we mention that they found that he has a bigger pneumonia that previously understood?  Now on IV antibiotics to try to take care of that.).

The bottom line is there are not many choices for getting nutrition while at home. No one will send him home with an NG tube. The one that is possible is delivery by IV, rather than delivered to his stomach. Alissa says it is always preferable to get your nutrients by stomach, but this can be a temporary solution. A home nurse would set us up and show us how to keep everything safe and clean.

The other challenge is that he has to be strong enough to go home. This means getting out of bed regularly and walking, keeping himself from turning into a wet noodle. Apparently he was out of bed three times today.

So, not a lot of progress today. But I will say I hadn't seen him since last night and I think he looks better. Still not another ounce of anything on his bones, but his attention is better, he is tracking a little better. Can't remember much, which is actually good because all of this is best forgotten.

A while ago, when we had a family discussion about end of life questions, Jon clearly said he didn't want to die in a hospital. So we really need to get him stronger and get him out of here. This is a little tiny bit of a nightmare, all the tubes and IV stuff. He doesn't seem to be near death, so we are likely to escape this time.

When people ask me how I am doing, I generally say that the kids are doing all the hard work and I am keeping the farm going. But today when I was on a tractor, I realized that what I am mostly feeling is that I miss Jon. I miss having him at home, taking care of me and all of us. We are a long way from that right now, but that is what we want.  And so we will do whatever we need to do. It seems that patience is required. And Alissa says we have to watch these people like a hawk. That too.


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