Parked, Engine Running

7:45 AM     No fever since Weds night.  He is on the standby list for the bronchoscopy because usually these are scheduled further in advance. The first day that it could happen is Monday but there are no guarantees. They have returned to using his central line which is a big relief to everyone involved -- the IV line in his arm was unsatisfactory compared to having a hose with a valve on it.  Drawing blood takes seconds. People come and go all day, asking how he is feeling. When they ask him to tell the story of why he is here, they have to pull up a chair.  

Nothing much will happen over the weekend. Rebecca arrived yesterday evening and will stay until Sunday morning.  Jon did not want anyone to spend the night with him in the room, he doesn't need any particular help, so Rebecca came with me to the apartment and helped me eat some of the leftovers. 

In a little bit, I will go take a long drive to the country and have a look at some farms. (This is what we thought we might say if someone asked where we went when we went on outings before...)

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So how is Jon, really?  Frustrated about how long this all taking. Not in any pain. Hating being helpless. But, in truth, he would rather be where he is in the hospital right now (the bed is vastly superior to other beds in the world) where things can be assessed and dealt with and where he doesn't have to go through the intake procedure again.  While he understands why these procedures need to happen, it doesn't make him more patient about all of it. He also hates not being able to anticipate or influence the next steps. Not that he wants to make medical decisions, but he definitely wants to be informed at every turn. It is very interesting to be in a teaching hospital and we may be benefiting from all the patience and empathy that seems to come with newer doctors. The trouble is that some of the information turns out to be not completely realistic (like one infectious disease doctor said yesterday that the procedure would be in the room, there would be light anesthesia, it would be late in the afternoon -- none of that is true and they probably should not have said that at all.) and he has to learn later that there are new realities. We haven't been in a hospital for many years before the pneumonia in November but we are learning more about the way things happen. I am constantly amazed by the way nurses and doctors can just arrive and start working -- new patient in the room, but we know how to change a dressing, hook up an IV, read a chart, etc. It's so fraught with the possibility for error, but they are extremely competent so far. We know from Alissa how much information needs to get passed on between shifts. I like it that the attending in this part of the hospital is the same one who manages the whole IPOP and that doctor is on duty for two weeks straight, night and day. While this may be a very long haul for the doctor, this seems to be a very smart way to make sure that the care is consistent and the doctors can see the changes in the patients.  Yesterday Dr. Paul came in and asked Jon how he was, and he noted right away that he thought Jon sounded stronger and louder. He also noted, when he told Jon about the current plan, that Jon didn't seem too excited about that.  In the next few days he may learn more about Jon's level of expressiveness. That wasn't unexcited, that was discouraged and slightly resistant.

Yesterday I got to go outside and have a picnic with Paul and Martha and Bean. Paul and Martha are in town for a pre-wedding ceremony for Bean and they planned this Jon/Hana visit long ago. Jon couldn't come but I got to sit on a blanket in the sun with lively conversationalists for over two hours, eating delicious treats that they brought with them (including banana pudding that Martha made at the last minute because I kept saying that would be a nice picnic item).  There is no easy place to sit on the grass around here but there is a median strip in front of the old hospital and we just plunked ourselves down there. It was such a nice afternoon.

When Nancy heard that Rebecca was making plans to come up by train, she thought that didn't sound quite safe enough and she rearranged her Friday afternoon to drive Rebecca up here.  Way beyond the call of duty.  Lots of traffic time later, Rebecca arrived at the front door of the Harry and Jeannette Weinberg Building and we went up to see Jon.  Rebecca has always loved airports for the way they provide everything, all contained, and as I suspected, she has the same appreciation for hospitals. She will be perfectly happy staying indoors for two days, lounging around with Jon, both of them on their laptops.

Last night we had a reasonable facsimile of home (for the last two years, Rebecca and Jon and I have spent most evenings together in the livingroom, each on our own couch with our own entertainment).  All three of us in the same room, me knitting, them reading, and we attended Shabbat services and watched the choir concert. The sound would have been infinitely better in person, but I was glad to be there, and I knew the music by heart because I only missed the last two rehearsals.  I am sure I enjoyed it much more than the average listener.

Afterwards, at my insistence, we shaved Jon's head. He wasn't too excited about it, but he let us. His hair was all patchy and coming out in funny clumps. Rebecca figured out how to use Anna's equipment and Jon sat in a chair and let it happen. He looks quite good now, if we do say so ourselves.

I suspect I will not write another post today, so take a break, y'all!