We made it through the first week at home. It was trying at times, I'm sure for both of us. Bill still is not wanting to move much, and when I tell him to do his exercises, he just starts wiggling a finger. Very frustrating!

We did have a talk about him getting weaker and if that happens, I won't be able to care for him and he'll have to go to a nursing home. I didn't say that to be mean, but it's the truth. If he should fall, I would be hard pressed to get him up.

He did get better as the week went on until yesterday evening. He stopped keeping his urinal with him and started to walk to the bathroom to do more than...well you know what he can't do with a urinal. He also started getting dressed instead of staying in his pajamas. Now, I like staying in my robe and pajamas too, but not every single day. So, getting dressed without me telling him to do it was a plus.

His appetite has been slow to come back. Part of the reason for that is he's drinking more. We had burgers the other night and he only ate 1/2 of his, but he drank 2 glasses of milk. I've told him I'm going to have to treat him like we did the kids, limit the amount they could drink until they had eaten. He got better after that, but still only ate 1/2 of his sandwich the next day for lunch.

His stomach still seems to be full of gas/air. If he has been reclined some, as soon as he sits up he starts belching. He's on a probiotic and an acid reducer so I'm not sure what is causing that. It's almost like he has acid reflux, which he could have. 

Yesterday we had a turning point with meals. I fixed a big breakfast; eggs, sausage, biscuits, gravy, coffee and Bill had 2 eggs, 2 sausage patties, 1 biscuit, with gravy on half and butter on the other half, coffee and milk and cleaned his plate! I told him since we had such a big breakfast that if he didn't want lunch, that would be OK. But, around lunch time he saw an ad on TV for pizza and said he thought he might like to try pizza. Instead of ordering one, I just went to the store to get the frozen ones we like and he ate 4 slices! During this time, he didn't complain about his stomach at all. We've tried having him eat before taking his meds, but his meds are the same as he was taking before so that stymies me a bit. 

Mid afternoon, he told me he couldn't get up to go to the bathroom, he was just too weak and his stomach was bothering him. I was on the phone so instead of insisting he get up, I just got the urinal for him. He was still complaining about his stomach, but decided he wanted a bowl of chili for supper. I had made it the day before since it was cold and rainy and he ate a big bowl of it. By 8, his stomach was bothering him, and he wanted to go to bed, but I had to help him to the bedroom (he stopped using his walker by Wednesday). Again, every time he sat up straight, or tried to stand, he would grab his stomach and start burping. (I had terrible reflux in the night and my throat still burns, even after the Gaviscon at midnight). So, it's still a mystery. We haven't gone to the local dr. yet. They are in the middle of switching to a new system, and our practitioner is up to her hair roots in it, which is driving the ones who are actually being trained on it nuts, but that's another story. So, I'm just monitoring it.

Brianna came over Monday and between us we got his feeding tube flushed. It did take  using the little skewer again before we could get the water through. She found out that some of what they were told in nursing school was wrong, and she passed it along to her fellow students. They had been told that patients couldn't feel when the tubes were flushed, or bolus feedings were given. Bill can feel when his tube is flushed (the water is cold). She had also asked her instructor if the water should be warmed first and she said it didn't matter. I haven't tried warm water to see if he can tell a difference. 

His sugars have gone up again and he's coughing more again since he's been home. But, his oxygen levels have been within his normal range except for after he's walked. He's dropping, but we know he does that and he recovers well. We see the infectious disease dr. on Wednesday. We actually see the nurse who told us last time just to avoid sick people and wash hands a lot and they he was in the hospital the next day. I requested labs be done on Tuesday so that I can go armed with a white count this time. I also heard from Stephanie and she wants to have his Prograf level checked since Memphis increased his dosage, so we're getting that done at the same time.

I have a dilemma about which lung dr. to call. We love Dr. Burbeck, but whenever he's in the hospital, he has to see the lung group the transplant program uses, no matter how much I've complained. So, that group now knows more about him than Dr. Burbeck, so do we switch to the other group? Dr. Burbeck can read all of the hospital notes, so she can have the same information they have. I'll have to think on that a little more.

So that's it, I think. The cats let me sleep until 6 this morning, which was nice since I was up and down all night. And Bill has gotten up and needs to have some breakfast before his meds, so I'd better get busy. I'll let you know what we find out Wednesday!