Sorry you are dealing with this, many here have. It is the most difficult thing to watch someone you love become someone you do not know, especially when they are there some of the time. My wife doesn't remember a lot pre-transplant. She went downhill so fast, and so...impressively that I had time to myself. Too much, in fact. I ended up working 2 jobs to keep all in order. She spent almost 5 solid months in the hospital.
I cannot stress enough getting in with a proper transplant team. The whole team. When things get bad, especially with HE, at least a night in the hospital is needed to clear the ammonia. You just can't deal with it at home.
If you are getting brushed off and he is able to be listed, I hate to say it...but have you considered moving to a place you CAN get a good team? I am not sure, don't remember where you are located, but I know a lot of issues in this country right now revolve around health care, or severe lack of it, depending on the state you live in. I know people who have moved just to get healthcare.
This is one of those situations where it only takes a moment for everything to tumble down, and fast. I have watched it and never thought for a moment that it could happen so fast.
I hope your docs are listening, but if not, get thee the heck away from them and find a team that actually sees ahead, instead of just maintaining and treating it like it is nothing.
I hear a lot of this going on in your posts and it hurts, as there where several docs in my wife's care who were of this bent. I immediately went to the head's of whatever floor/care she was in and got that nipped in the bud.
Sometimes you have to be that squeaky wheel, there were many days I was sure those docs/nurses would have been happy if I was one of those who did not care, but as I watched people die left and right in the time I spent with her at the hospital, alone, uncared for...I just got louder and more adamant. It helped that I am a chef so fed them goodies OFTEN, lol.
We are at 2 years post transplant, after me having head nurses tell me over and over 'This is it, she might last the day' to docs telling me they would never transplant her, she wouldn't make it to that magic 6 month mark, to docs straight out saying she just needs to accept, and I needed to accept, her pending demise.
There is always hope, but sometimes you have to make it happen. The question I would have for you, is if you are up to the challenge. It is a mighty endeavor, very mighty indeed.
Your whole life has changed, his whole future has changed, but it does not need to be for the worse.