I had meant to get an update out yesterday, but since I am now awake at 2:45AM I might as well do it now.
The doctor followed through on my suggestion and did an ultrasound - his stent was fine, in position, and working. They also determined that his gut fluid levels were not what they had feared and passed on doing the needle test. Instead they raised the dosage of his meds and kept him under watch.
Once his ammonia levels were back to a reasonable level and he no longer required constant medical care, just the constant supervision, they located a relatively local nursing home about half way between me and the VA, with both a dementia ward and rehab facilities. When I had spoken to the social worker I had made it clear that if he was given rehab and he improved enough that he could be safely left unattended for periods of time I wanted to bring him home. This sounded like an ideal 'half-way house'.
Except that the day after they transferred him there, as I was en route to sign the admittance papers, he took a fall, cut his head again, and was transported to the local ER - 4 more staples in his head. He seemed reasonably alert and cheerful, though still a bit confused, so once they were ready to release him I personally drove him back to the nursing home. He was not at all happy when we got there - he clearly thought that my being there had meant he was going home. I felt lousy leaving, but he seemed to understand what I was saying; if he works well at the rehab so he can move around better I would bring him home.
However, when I went back up to get the papers finally signed the next day it seems there had been a miscommunication. The VA was putting him there long term, and unwilling to pay for rehab. As nearly as I can figure it they know that with every new encephalopathic episode he would 'lose' everything he had relearned, so it made more sense to simply put him in the dementia ward. I was unhappy, and questioned the wisdom of doing it this way, so they were going to set up a three-way conference between the staff, the social worker and me for some time this week, to discuss the situation.
He called tonight, around 8PM, sounding agitated, angry and confused - he wanted me to come get him. He hates it there - the other patients - all full-fledged dementia and Alzheimer's patients drive him crazy. The staff doesn't do anything he wants them to do. They tell him what to do. I tried to soothe him.
I also reminded him that even at home he hadn't done the walking exercises the physical therapist (at the VA months ago) gave him. He also had refused to do the mental stimulus exercises - puzzles, reading etc that he was supposed to do to boost his mentation. So if he still was having trouble walking and reasoning he clearly needed 24/7 watching, which I couldn't do at home. He got angry - to the tune of 'thanks for nothing'. I know I was right, but it didn't make me feel any better. He also complained that he didn't like the food - they kept bringing him hamburgers, and he is supposed to be on a very low protein diet. That upset me and I promised I would be on the phone first thing in the morning to find out why he was not being kept on the proper diet. That seemed to help calm him a little.
So - at 2:45AM the phone rang. I was annoyed and muzzy-headed - I had finally gotten deep into the most healing sort of sleep - but it was neither a wrong number nor some touron looking to book a room. It was the VA social worker. He had just been taken back to the local hospital after another fall. More telling was that his mental status had taken a nose dive. He had gotten up to go to the bathroom, which happens several times a night, but he neglected to remove his pants first; needless to say he managed to make quite a mess . The staff tried to help him and he became aggressive, combative. Then he fell.
I explained to the social worker, who clearly thought this was some radical new symptom, that no - this has happened before, while he was still under my care at home (fun to be me, huh?). It meant he was having yet another incident and his ammonia levels were probably through the roof either because he was not on his proper dosage or due to his diet. I wanted him moved to the VA, where they know his history. She recommended calling the ER and filling them in on both his condition, and my request for the transfer. So I got the number from her and called. The nurse said she would inform the doctors of both the reason for his condition - encephalopathy (I didn't get into the diet as the most likely cause, as it wasn't relevant to the situation) and my request for a transfer. No promises - but at least I had given them a starting point for treatment. I'll call again in the morning
So here I am - once again awake in the middle of the night due to his condition, even though he is supposed to be getting proper care by competent staff. At least I know it wasn't anything I was doing wrong now, but I am very unhappy with the nursing home and the VA at the moment. I don't know how many miscommunications I haven't yet discovered. First being put there for long term care in the dementia ward rather than getting help in rehab (though as I said, I think I understand why), then not keeping him on a low protein diet. I need to talk to the staff and find out if they were even informed of that - and if so why wasn't he being given the correct food? If not I want to know who briefed them on his needs.
Even at the VA there were miscues about that. When I first saw him after his gall stone incident he had been given chicken with cheese over it for dinner - not exactly low protein in my book! When I questioned the nurse at that time she said 'oh no, he's on a low fat diet for his gall bladder'. So apparently the gall bladder doctor rules over-rode the liver doctor rules when he really should be on low sodium (blood pressure) and low protein (liver) and low fat (gall bladder). Not an easy diet, or particularly palatable without careful thought, but doable. I was doing it as well as I could at home, but here they don't even seem to be aware of the need.
Yet even at home, even with me keeping on top of his meds and keeping him on the prescribed diet, he still fell back into this state, so maybe he has gotten past the point where anything is going to help for any length of time. One of the doctors did say that as the disease progresses his liver is going to do worse and worse, and no matter what we do his ammonia levels are going to rise. The rest of his organs are already compromised - his kidneys are already struggling with the strain; not yet to a point of needing dialysis, but they are watching them.
So how am I supposed to go back to sleep after all this? It's almost as stressful as if he was still here. The only difference is that I didn't have to be the one cleaning up the mess or driving him to the hospital, and I am home rather than sitting up in the glare and noise of another ER. It never stops. However, when I think about what it will take for it to stop, I bite that thought back, because with his condition only two options will make it stop - a liver transplant or death. The odds of him getting a transplant now are remote due to the advanced damage to his brain - what kind of quality of life would he have? Why make him healthy enough to spend 10 years in a dementia ward instead of just one or two?
I reiterate what I said earlier. This sucks.