Saturday, January 13, 2007

Too Much Change...

...and it's very upsetting to Jim. I really wish Patrick had not been taken out of the picture. Jim wants to cancel all overnight care until Patrick returns. I tried to do that this afternoon, but the scheduling woman, who is trying to watch my back big time, said I wouldn't be able to do a full week and a half without help or sleep. Of course, she is absolutely right. She said she would keep the "temps" on the schedule and that I could cancel each day as needed, without their 48 hour cancellation fee.

Jim HATED day care at Eden Rock. No need to go into details, but he insists he's not going back there without a court order! There's another place--further away--that we will go visit next week. He has promised to have a better attitude about another place.

We signed Jim into Compassionate Care Hospice today. I have a really good feeling about these folks. He will get an aide 5 days a week (and the same person each time, we're told) and a nurse twice a week. Also available are a social worker, a chaplain, and a massage therapist. They also will be providing him a quad cane (one of those with 4 feet) and a wheelchair. The intake nurse ordered refills of all his liver meds today. They cover meds for his liver diagnosis, without cost to us.

The aide is a CNA, and will make him breakfast as well as clean him and the room up. Right now she's scheduled for 9am, but we're on the wait list for 7am so that he can get to day care on the days he goes.

I saw my breast surgeon Thursday--everything OK--a 6 month follow-up. She said my continuing pain from radiation might last another 6 months. (That reminded me and I just took a Percocet. I can only do that once every 2 days while the overnight aide is here.) I had asked for another scrip for physical therapy, but left the office without it. When I called back today, and asked for an undated scrip, the office manager cam back with a message from the DR--if I don't restart my PT NOW, I will have a permanent disability in my right shoulder.

I called the PT office, and with some wrangling, got 3 visit next week with PT Bruiser. Jim will have to go with me (if he's not in day care), and PT Bruiser is OK with that. I just don't want to hassle with finding sitters, but I have got to get the cording in my arm (scar tissue) resolved. I can raise my right arm only to about a 45 degree angle without pain. That's my primary arm.

So life goes on, a day at a time. Hopefully Jim will soon settle into a Hospice aide/day care schedule that he is comfortable with.

I forgot to mention that Jim saw the GI Guy on Wednesday. Jim's kidney values are such now that he does qualify for the transplant list, although he's not interested. The DRs are withholding his diuretics because they take too much fluid out of his cellular system and put too much stress on his kidneys. As a result, there is fluid retention (ascites) coming back in his belly.

And I was pleased with the Hospice today, when they said they would not have a problem covering pericentisis for him. That's where a radiologist or GI DR uses an ultrasound to locate the fluid and a huge needle attached to vacuum bottles to draw the fluid out of his belly. Jim's had it done 3 times so far. The last time, in ICU, I think they took 8 liters of fluid out, but that was when he was on IV antibiotics, so they were pumping huge amounts of fluid into him.

This Hospice also said that putting Jim onto the transplant list does not constitute "heroic" measures, and would not cause him to be kicked out of Hospice. (Another Hospice told me that getting on the list was cause for discharge, because that is aggressive treatment.) The nurse said just being on the list is a hope, not a reality, but that if he were to be on the list and called for a transplant, we would have to discharge him from Hospice before the surgery. These people do talk my language!!

My best to all, and I'm sending good thought for Alice's Sebastian and Kris's Janie. (These are folks on the FDMB, so my cat friends will know what I am talking about.)

Off to bed. I only have 5 hours before the overnight person leaves.

1 comment:

Alice said...

Sounds like some doors are closing but others are opening, that is a good thing. Glad you are getting back to PT. And great news about them covering so many of Jim's meds. Try to get some rest when you can. And Sebastian and I thank you for the good thoughts.