Ugh I'm sorry Reldra. Not a doctor but here goes.
Lost my Dad to liver disease when I was about 25 after caring for him for a few years (ramped up from a couple times a week to daily). One thing I
would have done differently was to get him away from his primary care doctor who was old and in my opinion not really on top of his game at the onset.
Old family doctors are great for certain things, but they're also prone to being lazy and set in their ways and may not know the best treatments
available/have too much of a relationship to be hard enough on the person who needs care.
They gave my Dad 6 months to a few years, longer if he could get on the transplant list. I think there are multiple reasons they give you such a wide
range with the prognosis (and this is after pinning down one of the doctors). If they say they are going to live for 2 years and they pass before, it
creates problems, and if they say they are going to live for a few weeks it creates problems. They can't know for sure, so they do the best they can.
I think this is to help them, the person who is sick, and the people who are caring for them who might need to plan for their loved ones care longer
than they may anticipate. Also probably lawsuits.
I don't know if I think taking her out of the hospital is the best idea. I think probably not considering all the things that are going on. We
bounced between a nursing home/rehab facility and the hospital and it was a nightmare. I don't think his stubbornness about not dying in or staying
in a hospital/care facility helped (thought I get it). I was unable to keep my job and keep the appointments, so I lost my job. Getting fluid
drained, meeting with a ton of people, coordinating and driving and dealing with lawyer stuff was more than a full time job. I'm glad to see you guys
have some of the lawyer stuff taken care of.
My Father got an infection while he was in the hospital, and died from it. My take is that being in the hospital in some ways increases your risk for
infection, but when you're in the hospital for something serious like this you're already at a higher risk for infection and are more susceptible. I
don't think taking your mother out is cut and dry. I don't think you should personally.
Are there any better hospitals? I wouldn't entirely blame the hospital, sometimes the Docs are really crappy at responding in a timely matter (why I
think primary matters A LOT).
Hospitals, in general, have only added to her main problem upon admittance, historically speaking.
I think it's true that in some ways it's riskier for her to be in a hospital (not right now of course, she needs treatment) but what are her other
options? Where would she go?
My Father didn't have any other relatives in the State (parents divorced) so when he was hospitalized I met with his lawyer and we signed me up for
all the crazy crap you don't want to sign up for, but I'm an only child and love my Dad so I figured it was best for me to be making decisions if he
couldn't. If you feel like whoever is supposed to be making decisions isn't working their butt of consider fighting them. This is the US, out
healthcare sucks, and unfortunately from what I saw you really have to get in there and throw some weight around and make it clear you're not just
sitting on the sidelines.
How bad does your Mom get when the ammonia levels get high? I have some funny stories that really aren't that funny, or at least I wouldn't share
with people because it would piss me off if they laughed without getting it hurt too. Just know it isn't her if she ever gets mean.
I feel an enormous amount of guilt from the experience, but you really can't prepare yourself for all the eventualities. Do your best and make it
obvious someone is paying attention wherever she is. And talk to her. There were a lot of things left unsaid between my Father and I that we said
when he got sick. I'm sorry you're going through this, it made me feel so desperate and scared and small.
Don't give up hope. My cousins dad basically blew through his liver and kidneys with alcohol and heroin, they gave him 6 months and it took 10 years
to catch up. I really believe there is something to positive thinking, so I'll think some good thoughts for you and your Mom.
Reldra I truly do wish you and your Mom the best.