The Mandelbear's Musings

I ran completely out of cope last night, about 11pm, in the process of getting Colleen into the bedroom. I think I'm a little better now, but probably still fragile. I lost it several times: gibbering, almost completely non-verbal in either direction, and occasionally sobbing silently and without actual tears. This is going to be harder than I expected. I haven't been that out of cope since one night when the Y.D. was a month or so old, sitting on the floor by her crib at some ungodly hour in the morning trying to wake up enough to pick her up and change her. Maybe not even then.

Taught my son-in-law to make fried matzoh this morning -- the Y.D. is home from school today because she can barely walk with her injured knee, and wanted comfort food.

Meta: note that I've switched tags from colleen-200812 to colleen-200901 to mark the fact that she's home from the hospital now.

I think maybe I'm ok now. OK enough to get through the day; that's all I can hope for at this point.

Spent almost the entire day with Colleen -- it wasn't my original plan, but I went in around 10am intending to get some training on the IV pump. Which didn't happen until she got hooked at about 1:30. Unlike what we'd been told yesterday, she's now on a 16-hour cycle (which is what she was on last time, and what we'd been told Friday). I got angry at a few people.

The "patient care coordinator" for the weekend is a large guy named Joe, with an insincere, lopsided grin pasted onto his face and apparently very little in his head. He's the one who had the gall to say "this usually runs smoothly" after royally screwing things up to the point where Colleen will have to come home Tuesday and not tomorrow, due to massive failure to coordinate who's doing what, when.

I did, however, get a good lesson in flushing the PICC line and changing the cap -- it's different from the last one. The lessons came from an RN from the oncology department, where they have experience sending people home with IV pumps. We also established in the process that the pump she had was damaged, and got a new one ordered.

I also made certain that somebody would be there tonight at 8:30 to train me in setup. That took a certain amount of being firm with people, but I got a call a little while ago and it'll happen. (She was supposed to train me last night, too, but neither Colleen nor I ever heard from her.)

Colleen became distraught at a couple of points, mainly when not getting a firm schedule for her surgery, and when finding out that she wouldn't be going home until Tuesday. She fell apart yesterday on hearing that she would be on a 20-hour schedule (which turned out not to be the case, but the staff were very insistent that they were right and what we'd been told by the doctor on Friday was wrong).

We've been jerked around a lot, obviously. It's also clear that this disease is a long-term, life-wrecking Big Fat Fscking Nuisance -- it might not be as life-threatening as cancer, but it's certainly life-changing and I think the BFFN tag is justified.

I've also asked to see a psychiatrist tomorrow. Not for Colleen -- she won't have anything to do with them, after some exceedingly bad experiences in childhood. For me, to learn how to cope with this whole "being human" thing, and in particular how to calm Colleen down to the point where she can listen and think rationally again, and how to restructure our mental lives to cope with sudden disappointments. I'm not convinced psychiatry is the answer -- in fact, I'm reasonably convinced it isn't. But it's what they came up with at the hospital.

We're also going to talk with her surgeon and GI doctor, and a dietician (she's been told that she can have liquids, including tea and supplements like Ensure -- loud cheers). She has a visit to our personal physician scheduled for Friday (rescheduled from Tuesday; I'd been hoping to just steal her appointment for myself, but...).

Colleen is, as can be expected, still rather grumpy, but on the whole she seems to be getting slightly better care this time around. When I was there this morning she was getting the wound cleaned out and packed with silver-gel-soaked cloth tape. (While high on morphine, of course.)

She started on TPN last night. The plan is to switch her over to the portable pump tonight -- I'll be there for training -- and for her to come home on Monday. Surgery hasn't been scheduled; she has to be stronger. Not clear whether that can be done on TPN or by eating -- not that she'd object to eating lots of steak. She's planning on missing Conflikt in any case, and Selkit and Kat will be staying on another week to care for her. Big win logistically, though she and a lot of people will be disappointed.

Stop by Kaiser Santa Clara room 2371 and give her a hug on your way to the party at the Starport Saturday. Or call -- she has her cell phone.

Yes, I'm using a horror-movie-style title deliberately. Colleen got her labs back from the visiting nurse's last visit yesterday; the results were basically "call your doctor: your white cell count is way too high." And she's been showing signs of inflamation near her fistula site for a couple of days. So when it, or a new one nearby, opened up at about 5:30 and started oozing goop, we knew the drill. At least this time there won't be any delay starting treatment -- we've been through that last time. And if they have any damned sense they'll move her surgery date up. And hopefully that will fix it.

She'll almost certainly miss Saturday's party, which will be particularly grumpy-making. And she may well miss Conflikt, which is only a month away. She's angry and frustrated and disappointed, but not in any pain at the moment. On a happier note, she's lost a tremendous amount of the water weight she'd put on; her legs are actually looking quite good.

I'll keep you posted.

12-31 8:18am Near as I could tell last night after they got her a little bit cleaned up, it's the old fistula and not a new one. I still don't trust anything in that area very much, though.