Yesterday was an interesting day to begin the newest leg of our journey. Bill called me right before 7 as I was gathering my things to leave telling me to come and get him because they weren't even giving him a glass of water!

He knows he can't have any, but I think is was still a little under the influence of the Xanax they gave him for the ambulance ride. I told him I would be there in a little bit and talk to them, which calmed him down some.

But, I was flustered enough that I was 20 minutes down the road when I realized I had changed my jeans and my drivers' license, debit and credit card and cash were all in my other pants. So, I turned around to get them. So I was later getting there with his meds that the pharmacy couldn't get than I was supposed to be.

Bill was laying comfortably on his bed in his new pajamas and he said that one therapy had come in and helped him get dressed. She had left a paper on his tray table with her name. I don't remember her name, Lindsey I think, and she was from occupational therapy. Bill declined a shower, I told him he couldn't decline the next one, but he at least was out of the hospital gown. He wasn't quite as grumpy as before but still complaining some.

His nurse came in with the meds and instead of pushing them through his feeding tube, she attached a piece and could just pour them in, followed by water. This is how his bolus feedings would be done. We talked about switching him from continuous feeds to bolus so that he would feel full and there are a couple of ways to do it. He could have the bolus feeds during the day, where the formula is poured into the tube and he would actually feel full. And then when he's in bed for the night, switch over to continuous to keep his calorie count up. She did keep his feed disconnected so that he could get out of the room for physical therapy. 

They were pleased with his actual leg strength and got him his wheelchair that will stay in his room for him and then took him to the gym. They didn't go in but they had him walk in the hallway and he may have walked 5 feet before he needed to sit. Not bad for the first time really walking since Nov. 15! Yes, that's how long it's been. That was the day he was admitted before he was later disharged to skilled nursing and then brought back to the hospital.

When we got back to the room they wanted him to sit in his wheelchair for at least an hour.  There are no nice recliners for them. He managed to do that and as it was lunchtime I told him when he got back into bed I was running to walmart and then getting something to eat.

After I got back the nurse came in and asked why he wasn't allowed to eat because speech therapy had come in while I was gone and was asking. She said he passed 2 swallow studies, he should be eating. So, again, I relayed Dr. Edwards decision and when it was made. She said she will work with him on speech, cognition and memory, and while doing the speech they would work on swallowing and he would get some pudding or something, but again only with her.

I did talk to Stephanie yesterday and she's going to talk to Dr. Patel today to formulate a plan. She asked me what the discharge orders were for follow-up and I didn't have them with me at the time. I have since looked at them and the only follow-up instructions are to follow up with skilled nursing...no follow with your primary care, or pulmonary, or cardiology, just skilled nursing. So, Dr. Edwards, still in his misguided thinking, believes that Bill will never leave the nursing home. Stephanie will be surprised when we talk today. She knows Bill's will, something Dr. Edwards didn't take the time to learn. She also wanted to know when our family meeting will be that outlines about how long they expect him to be there as that will determine any appointments in Florida. And, I know I had said before that I thought he would be too weak to make the trips again, that was before he began to show that he was getting his muscle memory back as to moving around, sitting up, rolling over, etc. So, I need to ask that today since it hadn't been brought up yet.

I have a survey from restorative care to complete and there are places to give praise to the ones who deserve it. There is also a place to indicate which ones, from drs. on down, came up short. I'll try to be nice.

After I read the discharge paperwork, and answering questions from the nursing home staff, I realized that I got absolutely no training on his feeding tube, meds, nothing. I was given a book that came with the tube and there is a place to write the amount of food per feeding for bolus feedings, but it is blank. So, again, Memphis completely washed their hands of him. Won't they be surprised when he walks back in to visit them! The nursing staff won't be, they know how tough he is, but some of the drs. won't believe it.

So, there were are. The first full day in the books. Today therapy will start "for real" as yesterday was just more evaluation so they can formulate a treatment plan. At least he will get tired and sleep when he needs to! 

I have enjoyed talking to his roommate. He told me a little about himself and how he learned his lesson. He was a noncompliant diabetic and ended up having a stroke and losing a leg just below his knee. That's why he's been in skilled nursing. He's been in hospitals a little longer than Bill continuously, since Oct. 27th. But, he's learned to walk using his prosthesis and is still being discharged Friday. He said he's learned his lesson, because he's not loosing the other leg!

All for today. I've got to get tax returns filed this week. The internet there is really good compared to the hospital so I may take the laptop and get them sent from there. And then again, maybe when I get home. They'll get filed one way or the other!