An Update for the Man with Nine Lives

Well, Uncle Jimi is showing some improvement.
 I have a tendency to want to lay down all the details, because once you are part of medical crisis, where hours become days and days weeks and now weeks months, it is hard to keep it all straight.
At the same time,  I fight to protect the dignity of a very private person, who's dignity has been stripped six ways from Sunday through this  situation.
Also, I would like to think that it might help educate someone to be armed with more information than I have been, should you ever have to walk such a road.
I too, want to keep the people who really want to know and understand up to date. Thank you to those that do.  I have long since found that folks fall off one at time as illnesses drag on to the point of someone you thought was a friend, not so much as feigning interest in what is happening in my world.  I know, it isn't fun, or pretty, or entertaining, or anything but sad.
For those that are still walking along side, I don't want them to be in the dark.
So, what I did not need told to me, the doctor remarked this morning, "At the end of day, what we're dealing with is two failed organs."  Yes sir, I know, but if it is a day or a week or a month or year, I will fight for some joy in those days for him.
So this isn't a post of Gramerly fairy magic and cuteness, just saying.
Five weeks ago he had a procedure that stopped the bleeding. The name is TIPS, but in a nutshell, it lets the blood go on through the liver instead of backing up into the stomach. The awful bleeding out stopped almost immediately and they sent him home with a new med and said he'd be good as gold.
So hurrah, right?  Wrong.  The liver no longer filters ammonia, which will go straight to your brain and make you "a little confused."  Whoever coined that phrase has clearly never had a high ammonia level.  Okay, no problem, take the Laculose (aka-laxative) and go to the bathroom all the time.  Oh, what about the four hours you are in a chair having dialysis?  Nothing mentioned about that.
When Jimi came home after the first six week stint, he was faithful to do everything asked and was in fact, mowing the lawn and managing well when the bleeding started again and one hospitalization after another, the last one being ten days.  During this time they did no physical therapy, didn't get him up and moving and I was not allowed to be there at all.  As an aside, that was probably the happiest days in the lives of people who don't have deal with me when care is inadequate.

Since the TIPS procedure, he has gone straight down hill.
Each time I picked him up from dialysis he was diminished.  On Tuesday I got a call that dialysis couldn't be completed because he was too "squirrely" I knew we were going down a bad road when they had to help him to the car, then home where he fell in the bathroom.
I was to pick him up to Wednesday for his regular doc appt. In the best of times my goal will always be to keep someone at home if you can, but during this pandemic, even more.  I had hoped I could get him to the doc and get a better plan worked out.
He was in bed and  only able to say, "Yea, " to me. Couldn't respond physically to any request, practically catatonic.  I had to call an ambulance.
They would not let me go back with him, even though he couldn't say or do anything.  Then it was four hours before I even found out what was going on.
 Ammonia should be 16 to  60, his was 150 along with  a chaser of a raging UTI.
Finally they get him in his room. He could not even scratch his own nose.  Pitiful.  So I stay for several hours and something appears to be working because he is responding more and more to me. I tell them it has been 24 hours since he's had anything to eat or drink, can I give him water or ice chips.  They tell me no, he has to have a swallow evaluation.  How many times have I been through this.  The kitchen people walk in immediately after this to get his meal. I told them to bring me oatmeal and an Italian ice, which I fed him, and he swallowed fine.  I pleaded with the aide and nurse to please offer him ice chips through the night.
I was there before they ( night shift team) left the next morning, as soon as they would let me in with coffee and more oatmeal and was devastated to learn that he wouldn't respond to anyone or accept a drink.  What?
The doc ordered an ng tube to get the Laculose in and something else to get it back out.  I asked if the doc was still on the floor and he was and came back in.  I asked could I try and he said, "Help yourself."  Jimi was totally responsive to me, ate the food, drank the coffee and took all of his meds and was answering in complete sentences, got up with help with from me and went to the bathroom and walked back out.
So, deep breath, okay, we're moving the right direction.  He gets dialysis and so I can imagine that Friday is going to be a much better day for him.
Wrong. I walk in Friday morning and he doesn't know who I am.  What in the world? After assuring me that the Lactulose would do the trick, ammonia was up.
Well, I guess they gave a confused man an antibiotic that causes confusion.  Two steps forward, three back.
The hospital is understaffed, one LPN to six patients and I believe the aide said she had eleven patients.  So, he again can't make a coherent sentence, scratch his on nose, ask for or hold a drink cup or press the nurse button while Lactulose is literally being poured down his throat and doing its job. I needed to be at school for an in-service, so Tish and Jake and Jordan played tag and he was pitiful all day.
By yesterday morning, he was again very responsive to me, still unable to feed himself, but start to get the hang of getting himself a drink.
The miscommunication never fails to floor me.  I very kindly expressed to his general doc today that the  GI docs were remiss in working with Jimi and the dialysis team to educate all the players.  Dialysis folks told Jimi to severely limit all fluids, and never told him different after the TIPS.  Do you know what Laculose does?  Pulls water from the body to the intestines.  He needed more, not less fluids, lots more.  So dehydration, ammonia, UTI, antibiotic and he is sent back to square one.
As you might guess, as the confusion clears, the reality of not being able to get out of bed when you are being pumped full of Laculose becomes a very real and awful problem.  So me back to begging the nursing staff to get him up on a schedule to give him the chance to do what needs to be done.  If you haven't seen him in long while, he is just about half the size he was. Skin and bones which makes what is happening very challenging for his skin.
And all this doesn't do the awfulness of this situation justice.
So, the goal, get everyone on board and get Jacob and I some more help.  Get the UTI gone, the ammonia down and move him to rehab.  My son-in-law has kindly offered to get on board to help with getting the medications in a timely manner and a schedule that offers the best help for Jimi getting what he needs.
I told Jimi that I so get wanting to be independent, but his meds are a slippery slope and when everything is working correctly together he is more than capable of managing himself, but when the ammonia starts its incline, his ability to manage starts to decline, which is what landed us in this awful place.
So that's the  essence of this hospital stay.
I really am not sure what to pray for anymore. Just mercy.

Update- Jimi was finally able to drink enough to get the laculose going to return to clearer thinking. They have moved him to rehab where he can only have one visitor a day.  I finally understand how everything fell apart for him.  Just another familiar case of one doc not bothering to talk to another when things conflict. Hopefully we can keep this from happening again.