With PCA -- Aiming for Home

Dear Family and Friends,

Since 4 pm yesterday Francis has been given a job -- to press a button every time he's in pain. The PCA (patient control analgesic) machine he's connected to then delivers a small amount of dilaudid, a derivative of morphine. It's the same med he hasn't been able to tolerate by mouth because of upset stomach and nausea, likely caused by radiation.

He can't get too much dilaudid because there's a "lockout" mechanism enforcing a 10 minute wait after each press of the button. After this 24 hour monitoring he'll be set up with -- not a live IV like the PCA he's linked to now, -- but a subcutaneous pump which works like the insulin pump, delivering meds through the fatty tissue. That means, soon, I fully expect, -- he'll come home!

I'm relieved the meds depends on him and not on the nurses whose approaches differ. One night earlier this week his night nurse told Francis she was going to give him the higher total dose allowed at bedtime because it would give him a better night's sleep. I felt uneasy about it remembering one doctor friend's and other nurses' too saying patients might not need as much at bedtime. (In fact, it could be dangerous.) But it happened so fast I didn't have a chance to object.

The next morning when Francis rose to get ready for radiation, his blood pressure plummeted (a side effect of dilaudid.) They told me there was a scuffle trying to get his BP back up. Lynn walked in in the middle of it and called to tell me he looked awful. As a result they cut out one of his old, regular pills. Francis joked later the nurses said he had a bluish nose. But it's no joke to me: Now he's been told he can't go for walks unassisted.

After I put 2 + 2 together I asked his doctor about it this morning. He told me he wouldn't have given him that much, but that they "can't micromanage" the nurses; they're given "a certain flexibility." I can understand that need, e.g. A patient given a lower dose might need more later. But this seemed a pre-emptive dose to me.

I'm going to the hospital earlier today to be there when the 24 hour monitoring is up. It's gratifying to see Francis' appetite returning, -- "the best yet today," he told me this morning! And when he's home we'll get working on that daily 1 and 1/2 hours of "rehab" he would have gotten at a nursing home. It was never a question of Francis' really needing a nursing home. I learned that skilled nursing homes have separate wings for short term rehab. Scott LeClair, Francis' PT from VNA, assured me he can come 2 - 3 times a week and show me what should be done the other days.

With only three radiation treatments left, that's the next phase, -- rehab, detox and build-up. As a real "morning person" now, (I get sleepy by 10 pm,) I'm ready! I know I'll need your help. During this interim period of recharging, visiting Francis in the hospital, advocating and cooking to bring him a variety of treats, including daily eggs and popcorn, and greens at times, it's been a god-send to pull out those meal brigade portions I froze!

Thank you all, gracious, generous friends,

Elaine