There was a lot to process from yesterday and my brain was totally fried last night. I'm still processing a lot of it and nothing can be done until tomorrow, and much won't get done until after Christmas. I didn't take notes yesterday, probably will wish I had later, but that's beside the point now. Anyway, here goes.

Bill was awake and watching TV when I got there, waiting for breakfast to come. His oxygen flow was at 5 1/2 and he was staying in the low 90s. That's a good thing.

Since it was Saturday, most of the doctors don't come in, they just send their practitioners so we ended up seeing only 2 people. Cindy came in and said we were still on track for getting him home before much longer. I reminded her that he can't make it up the 3 steps into the house and that our oxygen concentrator only went to 5. She just said OK and said she'd see us tomorrow (today) and left. 

Bill got into his chair shortly after that, after a potty break and bath, and as usual, his numbers dropped into the upper 70s/mid 80s. He had to be bumped up some on oxygen and then Andrea from respiratory turned him back down when she came for his breathing treatment.

When Richie, the nurse came in to do his pre-lunch insulin check, he said that the plan was to discharge Sunday or Monday! I immediately said no and explained that he hadn't walked more than 5 steps in 6 weeks and there was no way he could get up the 3 steps into the house and that our concentrator only went to 5. Yes, he does have a walker to use in the house, but that doesn't help get him into the house. And, he's also desatting with exertion of any kind whether it's going to the bathroom, eating, or just getting riled up in conversation.
Richie said he would call Cindy and explain my concerns to her, even though I had just been through them with her. Dr. Edwards of course is the one who made the call, and from transplant standpoint, he can go home. But, I want pulmonary to make the call, since it is a pulmonary problem.

I did not tell them that I had the paperwork to appeal a discharge with Medicare with me. I've had it with me since day 1. Usually they kind of gloss over it and sometimes they don't give it to you until the day of discharge. But, you have to call for the appeal before signing any discharge paperwork. So, I'm prepared if that should happen.

After lunch a new pulmonologist came in. This group rotates through frequently and they have some critical care ones that work week-ends. The only time we saw Dr. Curry was on the week-end before. Anyway Dr. Bart came in and we discussed discharge and my concerns. I told her he had really only had PT twice in the time he was there and hadn't walked at all. We talked about getting the new concentrator and she was pretty blase' about it, those companies have 24 hour service, etc. etc. I don't think she realized that we aren't local to Memphis where I can just run home to meet them and swap things around. She did say that he would be in hospital through the rest of the week-end, so the panic of him coming home today subsided...some.

She suggested he go to skilled nursing for rehab, and I'm OK with that. At first he said no, but she told him it might only be a week to a month. After he processed it for a few minutes, he agreed. Nothing can happen on that front until Monday when the social workers and nurse managers get back. They just don't work week-ends. But, it's not going to be easy to get him places, especially with the recommended 6 liters of oxygen.

I asked her if a CPAP or BIPAP would be beneficial for him, so she had some blood gasses drawn. The results showed that he is not retaining CO2, his PH level is normal, and the oxygenation corresponded to what the monitors were saying is was. So, it would not benefit him. But now we know. She said he would benefit from the shaky vest. I think I talked about one of those in an earlier post. And she said they could get it set up through insurance. That's good since they cost 20-30,000! There are 2 drawbacks to that, would he wear it and it's another piece of 30 pound equipment to haul around. The vest may be lighweight, but the machine that provides the vibration is good-sized. Before long there won't be any room for us in the car!

So, it was a frustrating day. Emily talked to one of her friends who is a nurse manager at a local nursing home and she said they did have a skilled bed available. She also said the problem would be the oxygen. They do have concentrators that would provide the amount he needs, but they don't monitor it constantly and if he desatted, they may not be aware of it before he's really in distress (think back to last year when his sats dropped to 44 because they didn't check the tank). 

I was going to print out the list of Medicare facilities in the area to give the social workers something to work with, but I decided that I'm going to make them do the work and bring me the list. I know about which facilities I want to check out, and I will check them out before making a decision. Learned my lesson on that one also! 

So, you can see why my brain was fried last night. Almost too much to process, and if it was too much for me, it was definitely too much for Bill. When I was leaving the hospital, Richie told me he had talked to Cindy and she said that they would work on getting him stronger before just booting him out. So he must have conveyed how upset I was. He said he also understood that it would all be on me when he was discharged without having the 24/7 monitoring. At least someone got it. There have also been studies done that show that for every day a person is in bed, it takes a week to recover to the previous level of ability, and for every week, it takes a month to get back to baseline. So, with those conclusions, Bill technically stay in skilled nursing 6 months to cover the 6 weeks he's been in the hospital. I don't think it will take him that long. Once they really start working with him consistently I think he'll move right along. 

Good think I'm going a little later today again or I should have been on the road already! It's time for another cup of coffee and I need to bring Mouse in from socializing at the backdoor. I think he's in love with Tilly, and she with him. It's really cute to watch them on each side of the door, rolling around and sticking their paws under the door to each other. But, I can feel the colder air around my ankles so the door has been open long enough. The saga will continue! It might be interesting when Cindy comes around today!