Before I get into today's happenings, I'm fine today. I went to bed at 6:45 last night and slept until the cats woke me up at 4:30. I was a little skeptical about drinking anything, but my meds went down just fine. I didn't make any coffee, just got my caffeine fix from Diet Coke. Lunch was loaded baked potato soup (which is fantastic) and 1/2 a ham and cheese sandwich...no problems. Also ate dinner with no problems, although I decided not to try my leftovers from yesterday. So, I'm back to normal. I also noticed that all of the coughing I did helped my shoulder. It hasn't hurt at all today.

OK, now on to today. Bill was awake and alert when I got there and watching infomercials on TV. They just hadn't changed the channel from what he was watching the day before. But, as the morning progressed, he seemed to get a little lethargic and less responsive. Another breathing trial was started, but occupational therapy came in and he needed cleaned up. The liquid feedings are giving him explosive diarrhea and of course he can't say anything so just has to wait. This one required a complete bedding change. He would probably be mortified to know that I've included that, but right now it's a fact of life.

Dr. Threlkeld did say that he was stopping all antibiotics right now, but would still be on guard. Part of the diarrhea is also due to the high powered antibiotics being used. He's still in contact isolation. I don't know when that will be lifted.

The resident came in and said that since he was only getting 1 IV drip now, he didn't see any need for the central line to be left in. He also still had a single IV site that was still good. So, he asked his nurse and they consulted with Dr. Edwards and it was decided that it could be removed and a picc line put in instead. That was done this afternoon, but when I left at 4:30 the central line had not been removed. But, Connor was going to do it when he brought his 6 pm meds.

Bill did a lot of grimacing like he was in pain, and a lot of belching and gurgling. I asked him if his belly hurt and he said yes. He also said that what he was belching and gurgling was coming from his stomach, so I think he's having a little GERD. And, when he's being suctioned, it is about the color of his food. The dietician is going to try to adjust what he's getting.

He's also developed some dermatitis from the antibiotics, so Dr. Threlkeld ordered a cream for that. It actually looked worse today than yesterday and he kept reaching for his face to scratch it. 

The main happening today was what I thought earlier. Dr. Williams recommended that he be moved to the 4th floor which is restorative care. It's for patients who are having a hard time being weaned from vents (that's one of their specialties), trach care, long term IV antibiotics, difficult pneumonias, and intense physical, occupational, and speech therapy. Except for the antibiotics, Bill meets all of these conditions. The social worker made the call and they agreed to accept him as a patient. I think that although it is in the same hospital, it is a separate hospital. But, the same drs. can see him, and if something happened, he could be moved back to transplant if necessary. His nurse and I talked about it and I think she was surprised that I was all for him being moved. I also talked with the cardiology nurse practitioner about it being what was needed.

But, it wasn't 15 minutes later, Dr. Edwards nixed the idea. He wants the peg feeding tube placed and him off the vent before he leaves ICU! The peg, OK, no big deal. But, since he's having a hard time weaning from the vent, why prevent him from moving to the unit that specializes in that! His nurse was beside herself. She kept saying I've got to keep my feelings out of this and stay professional. But I know what she meant! She also said that with the therapy he will get in ICU compared to what he would get on the 4th floor, he would be in ICU for months to get to the same level. It may still take months there, too, but I don't believe it would be as long. We were both disappointed.

Dr. King came in late and said that since Dr. Edwards wanted the peg tube done he would to it either tomorrow or Thursday. When I told him that Bill had just had an off day, he said he would just check in tomorrow and we would look to do it Thursday. It's not a difficult procedure to do and won't take a long time. The physical therapist was in the room getting ready to start therapy and after Dr. King left said "what Dr. Edwards wants, Dr. Edwards gets".

Dr. Edwards is the head of the transplant program and he's an arrogant ass. (Sorry Mom). He is the one who doesn't want any input, comment, question from family and he wants to hear nothing about the complications Bill had during and after transplant. It's like if it's not one of his transplants he doesn't want to hear anything. He refuses to contact Mayo, yet I'm sure if one of his transplants was hospitalized at another center, he would want to be notified. Anyway, I got some input from my sister on ways to handle the situation about getting him moved, so now my rant is over!

Some have been wanting to know if Bill has been told that's it's OK to let go. I told him that while he was sedated, that I would be OK and while I didn't want to let him go, I would so that he wouldn't suffer anymore. I know that Mary Rose, his oldest daughter told him that they would make sure I was OK if he was tired of fighting. Well, today he mouthed that he wanted to go home. I told him that he knew he couldn't do that right now and asked him if he was tired of it all. He said that he was, so I told him if we turned off the machine he would most likely die and asked if that was what he wanted. I also told him that it was OK with all of us, me and the kids, if that was what he wanted and he said no, he did not want to do that. So, while he's getting tired of all the poking and prodding, he's still got some fight left in him. After that he actually perked up a little and gave the therapist a smile and I got a wink or 2. He said that it was OK with him for me to go home when the time came.

I have them looking for an extra recliner for the room in case I want to stay with him. The chair I have is comfortable, but it doesn't recline, and I don't want to sleep in the waiting room, or go to a hotel. Kind of defeats the purpose of staying with him. So, Connor was going to look for 1. All but 1 of the rooms is occupied again and I wanted to get one before another patient arrived. I noticed that one of the rooms had 3! I'm planning on spending the night on Christmas Eve. We've never been apart on Christmas and I don't want to be this one either, especially since it might be the last one. I'm going to look for a very small lit tree that I can sit on the window ledge, and we do have a couple of presents to open. So, we'll have our own little Christmas.

That's it for today. The wild cat is running from the foyer through the living room and sliding into the dining room, so I need to see just what has been banging around in places and then get ready for bed. I've found that leaving around 6 in the morning is just about the perfect time as far as traffic goes in the morning, and I get a great parking place usually. Plus, Dr. Threlkeld makes his rounds early. He doesn't round with "the group". Whatever the cat has now sounds heavy, so better go! More tomorrow!