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.

It was raining gently as I went out this morning to take the Younger Daughter to school; the air smelled clean and fresh, and the light was beautiful. I love the half-light of morning and evening, and rainy days with a little sun leaking out around the clouds.

We went to bed early last night; I think that of everything I've missed in the last month I've missed snuggling the most. I've written before of being a loner, and not wanting attention when I'm sick or hurting. That doesn't apply when I'm feeling lonely. That's a different kind of pain.

I woke up around 4:30 and got out of bed at 5:00; I should know by now that if I go to bed early that's going to happen. I should just get out of bed and make use of the extra time.

She's home!!! Still on TPN; it's an open question whether she'll be off it in time to enjoy a bit of Christmas dinner, though things seem hopeful; the radiologist seemed to think it was looking good on Friday. But she's home, in her own comfy chair, and I don't have to worry about taking her back in four hours.

I went over to fetch her at about 9:30; she got out at about 10:45 after we went over her meds and signed the last of her paperwork. Most of that time was spent ferrying stuff out to my car; my little Honda Civic was pretty well packed.

The house feels right again, and I'm a contented Bear.

I am currently sitting at home missing a delicious catered lunch at work because some idiot at Kaiser screwed up the equipment order that was delivered yesterday, so I have to sit at home to make sure we don't miss the replacement. Of course, the day we were *expecting* the delivery was Wednesday. And we may *still* miss it because the window from 1:00 to whenever Chaos gets home isn't covered, because I have to take Colleen to Kaiser for a radiology appointment.

At no point during this process has anyone called to make scheduling arrangements, or given me a checklist of what has to be done where and by whom on Monday when she comes home, or what specific equipment has to be in place.

12:54 The backpack, battery pack, and wall-wart have been delivered. The case coordinator has been asked to check on whether the pump I have is the right one (I'm pretty sure it is), whether it needs the optional air detector (maybe not), and what the scheduling for Monday looks like. I'm still grumpy.

15:56 And they still left off a part. IDIOTS! WTF do ordinary people do??

17:41 Apparently the missing part comes with the tubing set. But of course nobody knows this off the top of their head, let alone supplies documentation. I remain skeptical.

So, apparently because Kaiser home health are dragging their collective feet, Colleen will be coming home on Monday. It's not all bad: I'll have more time to get the house in order, and it'll simplify the weekend's logistics a little. But it's mostly bad, and Colleen is, understandably, nearly mad enough to throw things. I'm less upset, but that's because I'm a pessimist and I'm not the one in there.

In other news, I bought a commode. Whee. It doubles as a booster for too-short toilet seats, such as one finds in most hotels.

Just got back from two hours with Colleen at White Blossom, learning how to prepare her IV. Tomorrow I'll go through the whole process; tonight I just observed, and flushed the line (which I'd seen before). Ida, the RN, is a good teacher, and I seem to have a pretty good memory for processes.

There are lots of finicky details, such as how one holds the ports to keep air from getting trapped, and how one taps the air bubbles out (and in which direction).

There was a bit of a fright this morning, when the doctor told her she'd have to stay in the nursing home until the end of the TPN because, basically, she was too healthy to qualify for the home nursing. She assured them that she would stay housebound for the duration. !@#$%^idiots! It still scares me -- what if they look at this manifestly mostly healthy person and conclude, correctly, that she's only "housebound" because their stupid rules insist on it? Well, they started the paperwork.

Got a rather sad and lonely call from Colleen this morning, wanting my summary of last night's outing with Joyce, and suggesting an expedition for this afternoon.

I damned near lost it, and I'm not entirely sure why. In particular, I slowed down, stammered, repeated myself, and was generally freaky; I hope I didn't upset her. In part I'm deeply worried about the whole impending home care situation, in part there was a lot of distracting background (TV) noise on her end, and in part I had made some other, though tentative, arrangements for the afternoon (music and conversation with Joyce) and had no idea how to tell her or how she'd react.

Plus, I'm worried about a friend.

Feeling nearly sick from worry, unfortunately, doesn't solve any problems.

Went directly from taking the Y.D. to school, to a visit with Colleen -- it's only a couple of blocks. The Wolfling has only one late-morning class on Fridays, so she can take the bus. Spent some time comparison-shopping at a couple of medical equipment stores, looking for lightweight wheelchairs (more specifically, folding transfer chairs) and hospital beds.

Squeezed a half-day of work in around the edges, with a long phone conversation with Colleen's case manager and another with E (whose LJ name I'll probably remember tomorrow sometime) in the middle (missing my noon walk in the process, of course).

The bottom line is that Colleen has to be "housebound" in order for the home care nurse to come out and help for a couple of days. I don't mind shading the truth to get around stupid, inapplicable regulations; the only thing that worries the heck out of me is that I might not pull it off, meaning we'd be stuck without the home nursing care. Which is why I want to make *damned* sure I know what I'm doing before she comes home. Idiots.

As for timing, it takes three business days to push the paperwork through. So the very earliest she could come home is Friday, with Monday more likely. And sometime next week (hopefully) she gets a fistulagram -- a high-contrast CAT scan, I think -- to see whether it's closed. At which point they can make decisions about things like taking her off TPN, and doing the hernia-repair surgery.

So, progress. And I've learned a lot. The nurse doing the IV seems happy to teach me, too, so that's good. I'll probably be back every day this week except for tomorrow (the $COMPANY holiday party -- I'll be taking Joyce, since Colleen is in no position to enjoy a fancy restaurant) and maybe Wednesday.

I rarely take walks at night anymore, but it seemed like the thing to do. Didn't improve my mood much, but at least I got a walk in and I suppose it helped a little. Walked around the Rose Garden; the gates are locked at sunset, so I wasn't able to go in. It probably wouldn't have helped much anyway, though there's always a little comfort to be found in the company of the Royal Amethyst.

The field beside the Middle School where my daughters no longer go was occupied by some sporting event I couldn't identify -- milling around and shouting under glaring lights. It was over by the time I was headed home, with a pair of school busses pulling up to take the winners or losers home.

My left ankle hurts - it hasn't bothered me for weeks. It probably just wants attention.

I want to have a deep conversation about something intricately technical. Or a lighthearted, whimsical conversation with somebody who just wants to burble about their latest source of joy. Or try to cheer up somebody who needs it. But I won't, because I don't want to bother anyone or call anyone up to just dump on them. And wouldn't know who to call anyway.

I want to sit on a couch with somebody sad and beautiful who I'm not in love with, stroking her hair and kissing away her tears, assuring her that everything will be all right.

Instead, I'm going to go water my nose, sing "The Mary Ellen Carter", and do something technological but ultimately mostly brainless like move a soundcard from one machine to another, write a one-page CGI script, or fiddle with Makefiles and HEADER.html pages.

Welcome back to the American health care don't give a damn and don't make any fscking sense system.

You may remember back at [15] that they were about to send Colleen home from the hospital before she was ready. The sent her to a nursing home instead. Now she's ready to come home from the nursing home. All she needs is a portable pump, a supply of "food", and a home care nurse to come out and train her family members (i.e. me and Kat) in how to attach and detach the pump.

... and certify, according to some whacko Federal Medicare regulation that shouldn't apply because we're not on Medicare, that she's "housebound". Otherwise she has to stay in the nursing home. EXfrackingCUSE ME?

Apparently the only other way to get this done would have been for her to go directly home from the hospital. And it's not clear that she'd be getting the kind of portable pump that they were looking to send her home from the hospital with. Because she's "housebound" and doesn't need a pump she can carry around with her if necessary.

I am hoping that Kaiser will figure out some way to get us the equipment, training, and supplies we need to take her home and save them thousands of dollars. But I'm not very hopeful.

Now, it's entirely possible that this was explained to her back three weeks ago when she was high on morphine and crying hysterically. I wasn't there.

Up until 5:30 when all this came down, it was a pretty good day. We went in to Kaiser to see her gastroenterologist, and had a nice drive back. The news on the GI front was encouraging, though it confused Colleen badly. Basically, the surgeon in SF who specializes in fistulizing Crohn's Disease says he's never seen a Crohn's-related fistula in a hernia pouch, especially since Colleen's problems have all been in the colon and since the fistula is closing on its own, which doesn't generally happen in Crohn's. So it's almost certainly related to the hernia, which in turn should be relatively easy to fix. However, the timing of that fix is totally unclear at this point.