Bill called me yesterday morning, twice, before 5 am! So, that told me he didn't sleep again.
Again, it was a day that not much happened, but a conversation with our social worker raised some serious questions now. Hopefully I can get some answers today, or at least get the process started for the answers.

Because he didn't sleep, he didn't want to cooperate with therapy. And, that is one of the questions I have that stems more from a comment made by a couple of people. He's having trouble standing now for any length of time, and by that we are counting seconds, not minutes. Phillip, the lung PA, commented that it seems like it's more from de-conditioning than anything. I have to agree, he's basically been bedridden since November 15, although before the Dec. 2 incident, he had been taking a few steps. He has not taken a step, that I'm aware of since Dec. 1, so yes, he's deconditioned. When the nurses asses him and have him push against their hands with his feet, and when the initial therapists came in, they all comment/ed on how strong his legs are. He also used one of the little pedal things the second day he was in restorative care. He hasn't used it since, not that I don't think he would, it hasn't been offered. His only therapy consists of sitting on the edge of the bed, with the longest time being 15 minutes, standing 3 times and then put in his recliner, usually using the sling instead of the stander, which also makes into a seat. That's his physical therapy. The occupational therapist then gives him a wet washcloth to wash his face and his comb to comb his hair and that's the end of therapy for the day. No range or motion on his arms or shoulders and no leg exercises while he's sitting. So, something to mull around this weekend since they don't do therapy on weekends.That's also another thing, the little ground he may gain during the week is lost over the weekend.

The bright spot of the day came when Dr. Fox came in and said since he's been on trach collar for a week without having to go back on the vent at night that the inner cannula can be reduced. I said that they had been worried about the secretions and he said that if he's coughing hard enough to cough them out through the cannula, he can cough them into his mouth to spit them out! So, the tube went down a size. He also said to start capping it which will help him talk easier. But, that leads to the other question I have. The answer for that one has to come more from Dr. Edwards, who is again turning into Dr. Arrogant Ass.

When talking to our social worker Pam yesterday she said that he has ordered NO speech therapy of any kind, not just ones using ice chips, none at all! Now, there are exercises for swallowing that don't involve actually swallowing a substance that will strengthen the muscles in his throat, but Lisa, the therapist can't even do those. Phyllis, our nurse case manager, was livid when he said that, according to Pam. I think he believes that he is preventing him from more aspiration pneumonia, and he is. But, if he also thinks that Bill will never want to eat or swallow a sip of coffee, even thickened, he's wasting all of his time with getting him better. Those of you who know Bill know that food has always been important to him, and enjoyable, and if he can't eat or drink ever again in fear of more pneumonia, he will give up. He has agreed that the PEG tube is OK to stay, just to make sure he gets enough to eat, when he can eat. But, to tell him he will never eat again, will crush his will.

So, today when Dr. Fox comes in, or one of Dr. Edwards' nurses, I'm going to ask about it. Probably from the nurses I will get an evasive answer since they don't want to upset the boss, he has a pretty bad temper, but maybe Dr. Fox can find out. If Dr. Williams was the one on call this week-end, he could probably get him to come around, so I'm hoping Dr. Fox can also. If you're wondering why I just don't ask Dr. Edwards himself, he rounds late at night after I'm gone. He likes to round around 9-10 pm and since I'm gone by then, I never see him. 

So, this week-end I'm going to have to become the therapist and insist that Bill sit in his chair (the nurses can put him there). And I'm going to ask if they have access to the pedal thingy. If they don't I can get him to do the exercises that he was doing with home health. I remember all of them and they are all done seated.

He also called me last night to make sure I got home OK and asked how the drive was. It's a lot easier to understand him with the smaller trach. He just has to remember to slow down and take a breath in between each word. 

I was right about my lunch yesterday, it was fried fish, and most of you know, I don't do fish. But, I kept an open mind and ate about half of it. It was actually tasteless and gummy and I paid for it yesterday afternoon and last night. My stomach was upset all afternoon and evening and I had acid reflux in the night. So, I'm tired this morning from that and trying to work up the energy to get dressed. There's a detour this morning in Memphis so it will take a little longer to get to the hospital, and it's foggy. I would like to stay home until it lifts, but if I don't get there about my usual time, I know Bill will start to panic, even though he doesn't really have a sense of time right now. So, I'll grab another cup of coffee get dressed before long and head out.

I hope everyone has a good day!