The Mandelbear's Musings

Colleen is back at home, as of about noon today. Just finished up with Ellen, the home care nurse. Her visit, being the first for this round, lasted about 2 hours. We'll get one tonight for the TPN setup -- mostly to observe me -- and another Thursday afternoon for the weekly PICC line dressing change. The paperwork and pharmacy getting her home was about two hours, too.

But she's home. That's the important thing.

There's a bag of TPN fluid in the fridge for tonight; there'll be another eight bags arriving tomorrow (eight because deliveries are Wednesdays, and they want to be ahead by one because their normal window extends later than the usual time to hang the bag). After this week she'll be getting her weekly visits from Ellen on Mondays.

(The scheduling stuff is for my reference, of course. Don't let it keep you from visiting Colleen at the Starport -- she'll be here. Between the IV bag in a backpack that's a little too heavy and awkward for her, and the occasional dose of Good Drugs for dressing changes, she's not going anywhere much.)

The time spent yesterday with the psychiatrist and social worker was very useful, especially the latter. All I really got from the shrink was the number to call to set up an initial appointment, and what to ask for. The social worker explained a little about what the options are (I probably need something along the lines of a psychological social worker, but they're all dispatched from an initial appointment with a "therapist" in the psych department), and mostly was there for "emotional support" -- friendship, essentially. A friendly person who happens to be a world-class expert on what services you might need, both from Kaiser and the community, and how to get them. Raj was good, and if he shows up at the Starport some time I'd be delighted, but not surprised. I probably need to learn more about social work.

My stress level is way down now that Colleen is home and I'm no longer fighting bureaucracy, fear, and depression. May change when the Y.D. gets home, but probably not.

Happy bear.

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...).