How to begin?
When we arrived at Kentfield (3 weeks ago now) Marty was not gaining weight, but losing and was down to a dangerous 103.5 pounds. He was low on blood. How low? After one week they sent him to Marin General, where they gave him five units of blood. You and I have 10-12 at best. They gave him 3 units of fluids and a room with a view for three days and sent him back to Kentfield. If we had stayed nine days-Medicare clock would have begun again and we would be able to stay at Kentfield another 38 days. As it is we need to leave, vacate by the 31st of October.
He had gained weight there, mostly fluid and was doing well except that his lungs also had fluid on them and so they gave him lasix to bring down the fluid. Now his weight is going down down down again. So today they gave him a new diet a higher calorie liquid food through his j-tube, which of course gave him -you guessed it...Montezuma's revenge. Which as we all know ALSO contributes to malnutrition and needing fluids. What a vicious cycle.
I am reading Gail Sheehy's book, "Passages in Caregiving". She talks about catheters and how they lead to infections. So I asked if they had taken out the catheter that Marin General had given him and of course (because it was easier for the nurses) they hadn't even thought of it. So I asked nicely if they could take it out and they obliged. Marty said, but "It's been awhile and wasn't even certain if he could do the necessary duty without making a mess for them" I said, "Honey you have been peeing for 71 years without a god dammed catheter, I think your body will know what to do after only two weeks". Sure enough he did fine the very first time! I was very proud of him.
The Physical therapist was in at 9:30 am, and Marty asked for the RT to be there (smart man) while they got him up and in a chair. Even that was a major feat. He did fine, stood up on his own took many steps side to side...but just sitting up after 3 months is taxing. He did fine, however after an hour he needed to lie down and then, in the moving back to bed the trach got moved around and it caused him to not be getting enough air. Call to the RT (Respiratory therapist) and when the RT finally showed up, Marty's oxygen had started dropping , he was panicked ( and I wasn't happy) but he fixed it and we were sailing again.
His j-tube began leaking today, yup it was "stuck" nothing going in. Not meds, not food. Nothing. so they flushed it and today's nurse (who Marty thinks completely incompetent) simply walked away and in 1/2 hour the liquid diet was all over him and the bed. The 3rd cleaning of the day began (which means moving him, the tubes and everything else) More calls to the Respiratory therapist (RT) to intervene so he can breathe again, without distress and his alarms going off.
Today I was talking with Marty about our application for Medi-Cal. I said it is a good thing that his name is not on our house because that will help. He wanted to write, I gave him the writing board he wrote " It's as if I don't exist" . I asked why, he wrote " No assets" I said, "Honey, our true bank account... it's like what Richard Hoover of Santa Cruz Guitars said"... "our wealth is in the relationships we grow and the community we gather around us in times of trouble" and" YOU are wealthy beyond measure". I wrote out the names of all the people who have gathered around us to help (it took quite awhile) and I asked him to really look at that for awhile. he did. Then I told him, "these people love you and are devoted to you. No amount of money can ever purchase that." Sometimes it takes a bit of a re-frame. He felt better after that.
Well it's very early , I am up again after a worrisome troubled sleep so I write. Today will be another day.
The good news is we are looking to move next week to an excellent facility, Santa Clara Valley Medical center rehab. I am hoping Marty meets the criteria.
Thanks you and please write us at:
ginny@digitalmediafactory.com
Thank you friends,
This was Marty just one day after the j-tube was put in, before the perforated bowel and this whole mess began
.
I remember the pulminologists were absolute jerks when Neil was ill. I was so angry with their attitude. I know there are many patients in a hospital who all need help, but they weren't helping anyone. Neil thought they were all idiots, too.
ReplyDeleteMore love to you both.
Rhan