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mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

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.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

We went out for dinner last night, to Red Lobster. Colleen and I each had their plate of lobster tail, shrimp, and scallops; the Wolfling had a boiled lobster. The Y.D. had seafood fettuccine, and the Son-in-Law had steak. Everyone had salad, which is highly unusual for our family. As a delightful touch, the waitress remembered us from last Spring before the wedding.

Colleen and I took a bit of a drive after that, and after she had a bath (her first in over a month!) went to bed early for snuggle. I got up to take a bath, and instead ended up as the Middle-Sized Bear on IM for an hour. Then spent another hour or so talking with Colleen. Did I mention that what I missed most while Colleen was away was the cuddles? Make that cuddles and conversation.

Colleen and I will go to the Dickens Fair this afternoon; whether the kids go is up to them. Left to my own devices I'd probably want to stay home and try to get the house cleaned up a little more, but Colleen needs to get Out. I still have no idea where I put my top-hat; I found it a while ago under a pile of papers, and put it Someplace Safe. And we're out of eggs, which Will Not Do, especially when Colleen has been put on a high-protein diet to try to build her strength back up in preparation for surgery in February.

Beware of low-flying Bears.

09:45 Top-hat found -- it was, of course, underneath some other stuff in the bedroom closet. Right where I'd put it. Eggs and bread purchased; breakfast cooked and eaten. Leaving at 10:30, ready or not.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

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.

mdlbear: (sparkly rose)

Colleen just got a call from her GI specialist a few minutes ago -- he's looked at the fistulagram from Friday, and she's CURED! The first thing she asked for, unsurprisingly, was a cup of tea.

There will, of course, be a considerable round of follow-up appointments and pickups -- Apria has to pick up their pump, she has to get the ostomy bag off and the PICC line out, ...

But she's home, she's healthy, and she can EAT. And, because we don't have to keep her housebound to satisfy the home nursing bureaucracy, she can run her own errands! And there's room in the fridge because we won't have to store a week's worth of swill TPN supplies.

Happy, happy Bear. Happy, happy Cat.

And by the way... I'd just like to say how grateful I am -- we both are -- for all of you out there, your support and your good wishes. I don't think either of us could have gotten through the last month without your help. Thank you!

mdlbear: (sparkly rose)

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.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

Wonderful AJA concert this evening in Palo Alto. It did wonders for my mood, even with Colleen unable to come. Golden Bough concert last night.

Music helps. Tonight before the concert I was totally frazzled: worn-out, weary and emotionally drained. Now I'm just tired, but reasonably OK emotionally. Maybe a little out of it, though that could be the glass of port I'm just finishing.

I've now had several people confirm that I'm calming and helpful to talk to. I'm sorry this is taking so much getting-used-to -- it still feels weird, as if everybody but me always knew that I had two heads.

I should go crash now.

mdlbear: (flamethrower)

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.


Dec. 12th, 2008 08:19 am
mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

These days I'm used to having to take a deep breath before answering "OK" to a question like "How are you?" When it takes me 20 minutes, I think the answer is "clearly not OK." I'm not sure what it was, last night. Scared, probably.

I'd just gotten home from a good training session, hanging Colleen's IV. Which is OK -- I'm pleased with my progress. But there are so damned many things that can go wrong that I don't know how to handle that it still scares me.

Then my brother called to tell me that Mom had a minor stroke Wednesday evening. Eeep! He hastened to tell me that she's fine; there was little noticable damage and she's recovering quickly, but still... Stroke scares me more than anything else.

I think I'm OK now...

But I'll still need to pause before I say so.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

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.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

So there's been progress. The paperwork for sending Colleen home has been started; hopefully she'll be coming home on Thursday, though it may be as late as Monday because they don't like to send people home on Friday or weekends. The case managers for both White Blossom and Kaiser agree that she's more than ready. They also agree that it's OK to game the system in order to take advantage of the home nursing service even if their rules are stupid. (Added 12:02 Or rather, because their rules are stupid.)

I went through the entire process of mixing and hanging her IV tonight. Grateful, as usual, for my apparently-excellent memory for processes, and the fact that my right hand is unusually dextrous for a sinister person: I can thank the guitar for that one, I think. Even with both hands it's complicated; there are places where you simply flick a cap away with a thumbnail and clean up afterwards. I'm not really comfortable with it all, and would just as soon let the visiting nurses handle it.

I'm finally hitting the wall on energy and time: I could probably manage filling in for Colleen on chores and errand-running, given a lot of help from the kids. When you include visits, there just isn't time for much of anything else, and a lot of things are getting put off that really ought to get done. We'll make it... Having her home will help a lot even if she can't leave the house. And we'll both sleep better.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

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.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

I was feeling deeply worried this morning, and frazzled earlier this afternoon, with more errands to run than time to run them in. But I picked up Colleen a little after 2pm and she wanted a drive and some shopping, so in the end the only errand that didn't get run was picking up the replacement headlight bulb for the Honda. Tomorrow, when Honda's parts department is open. Gin, coffee, sponges, and green scrubbies did get obtained, and I got to push Colleen around Yamagami's Nursery on her new rolly, to look at the flowers and get some fresh air. Between that and a half-hour walk this morning, I've even had some exercise.

We'll make it.

I hadn't realized until these last few weeks just how much we both need time together and simple, physical touch. I've known for a long time how much Colleen needs them, but it turns out that we both have the same idea of a good time: a little recreational window-shopping and a long quiet drive with the occasional light touch and a bit of conversation. Yeah, sex is wonderful, and warm, happy snuggle is probably even better. Simple companionship may be the best of all.

The kids are out gaming; I'm here at home finishing off some leftovers for dinner, and heading back to White Blossom at 8pm to help Colleen mainline her dinner.

See mood

Dec. 7th, 2008 10:03 am
mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

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.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

The morning went by far too quickly, scouting medical equipment stores and making a few essential purchases. The coffee and gin will have to wait.

Picked up Colleen at 1:30 for an outing. We bought a wheelchair -- a Nova 22" folding transport chair, with 12-inch rear wheels, handbrakes, and removable arms. It's significantly lighter than the standard chair we've been renting, and a little narrower; it'll be usable on trips as both a wheelchair and a walker. With a little significant amount of tinkering it might even be possible to electrify it, but it would be inadvisable to count on that.

After that we went out for a drive: out Leigh to Camden, out Camden until it ends, looping around via Harry and Almaden, and back to Leigh. Bookmarked the long paved path that runs along outer Camden as a good place for me to take her for a walk. Or rather, for me to walk and her to ride in her shiny new chair.

At home briefly for her to catch up on LJ and hug the kids, then back to White Blossom. Was informed that my right headlight was out, so back home to swap cars.

Then I went to pick up Joyce to go to the $COMPANY holiday party at Il Fornaio in Palo Alto. High-end, and delicious. Good company, good conversation. Must take Colleen there some time to make it up to her. Very strange not to have her there; it's the first company party that I've gone to without her.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

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.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

Not sure why it took me so long to figure this out, but last night I moved a pillow on Colleen's side of the bed, down to where my back would touch it if I rolled over a little. I went to sleep quickly, slept soundly, and woke up at 5:30 feeling more-or-less awake.

Apparently I'm used to having her sleep next to me. Dumb bear.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

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.


Dec. 4th, 2008 07:41 pm
mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

Note to self: check on whether whatever route the hospital uses for discharge-to-home-care can be made available. The person I was talking to was the nursing-home case manager; maybe the hospital case manager can do better. Especially if the hospital route can get her a pump she can carry around. The nursing-home route is clearly not designed for cases like Colleen.

mdlbear: (flamethrower)

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.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

It was incredibly nice to have Colleen home for a Wednesday, even if all there was time for was the shopping, and a little less than three hours at home. The house misses her when she's gone.

I had originally decided to work from home on Wednesdays, but had meetings in both the morning and afternoon. I did skip my lunchtime walk and spend an hour or so with her instead.

She's in pretty good spirits, considering, and feeling a lot better.

See mood

Dec. 2nd, 2008 10:17 pm
mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

It's cold, and I'm lonely.

...and it shouldn't take half an hour or more to make a phone call to somebody friendly, somebody I know well, and make a schedule change for tomorrow. Pathetic.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

Colleen is now at a point where it's safe for her to leave the nursing home for up to four hours at a stretch when she's not hooked up to the IV, basically any time between 1:30pm and 8pm. Today I picked her up at 4pm (after collecting the Y.D. at school, since she's suffering from a muscle cramp of unknown etiology and would have found it next to impossible to walk home). She'd been waiting in the lobby with Joyce.

It was good. The house felt right with Colleen sitting in her usual chair; there were laughter and hugs and snuggles. For about half an hour we just lay on the bed with her head on my shoulder -- that's what both of us miss the most. Oddly, it wasn't too hard to take her back, though we left in something of a rush. I sat with her for about 40 minutes and held her hand, and helped her set up her little artificial Christmas tree.

She'll be coming home Mondays, Wednesdays, and Fridays; she also has an appointment with her gastrointestinal specialist on Thursday. I'll be working from home on Wednesdays; it's the perfect day both because of the amount of errand-running needed and because it's the same day that one of my coworkers works from home.

The only problem with her coming home some afternoons is that people coming to visit her get very confused; happened to her friend Marty today. I may have to print up something for her to put on the bed.

mdlbear: portrait of me holding a guitar, by Kelly Freas (freas)

As predicted, Loscon is being weird. Good, mostly, but weird. Got pounce-hugged by [livejournal.com profile] snobahr in the lobby, and much later had a good conversation in the elevator lobby. Spent a lovely couple of hours talking to [livejournal.com profile] impresaria1 by the pool as she watched her three kids. Then we went out for dinner, to the nearby Mongolian barbecue, with Bill and Carole (WINOLJ), and the Y. D.

What [livejournal.com profile] impresaria1 failed to mention -- or think of -- was that she's seriously allergic to soy. As in soy sauce. Can you say dumb? Thought so. Spent most of the evening taking care of her. She seemed OK when I left her around midnight, but an emergency call was only minutes away a couple of times.

Spent about 45 minutes down at the filk circle after that; sang Toolmakers and QV off-book using KR's 12-string. Not entirely sure I like QV capoed up on a 12 -- it could stand to be lower. (It's in C; I play it capo 5 with G fingerings, because that works better on a 6 with my fingerpicking style. So it can go either way.) Sang Wheelin' up in the lobby, and spent a lot of time noodling.

The whole day was punctuated with calls to Colleen. She managed to get out and go shopping in the afternoon. So that's very good progress.


Nov. 27th, 2008 08:40 am
mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

I don't always do one of these, but today there's a lot to be thankful for:

  • I have my family, pulling together in a time of crisis. Most especially I have Colleen, with me for over a third of a century, and two children who are growing up into beautiful young women.
  • I have, oddly, a son-in-law who loves my older daughter, and who gets along with the rest of the family.
  • My Mom is still alive, happily running the library at her retirement home a month shy of her 88th birthday.
  • I'm gainfully and happily employed, for a company that gives a damn about society and the environment.
  • I have music, and Tres Gique looks as though it's going to work as an almost-real band.
  • I have my heart back. Whether from a hormonal shift, a higher dose of Vitamin D, or good deep conversation when I needed it, I do.
  • I've had a year on the River; a year of extraordinary personal discovery, deep conversation, friendship, love, profound writing, long walks, and a series of experiences that, while sometimes painful, I have taught me more than words can easily express.
  • I have my friends, online and offline. Filkdom, fandom, and random, I love you all. Thank you.
  • I have love: people I love and people who love me.
  • ... and I am profoundly, inexpressibly thankful that Colleen's health troubles started before we drove down to LOSCON, so that she could be cared for close to her home, family, and friends.
mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

The morning got off to a rocky start. The day was dreary and dark, and so was I. The one bright note was going to Fry's and finding portable DVD players on sale for $79. I got to Colleen's about 11:30, half an hour after I had told her I would; she gave me a worried phone call just as I was parking. I went in and basically lost it, and ended up whimpering on her shoulder.

I hadn't realized I'd run that low on cope. Singing to her helped.

She called a little later, frantic, because she couldn't turn on her DVD player. Turned out that she was pushing on the power light, on the front edge, rather than the power switch on the side. *sigh* She figured it out just as I was ready to head out the door.

Neither of us is all that high on cope at the moment, but she's doing better now. I went in again about 3:30 to bring in a pair of earbuds and a couple of dresses for her to wear. Found her sitting up (in the comfy folding chair I'd brought in this morning), disconnected from her IV for the afternoon, and reasonably chipper.

I spent a lot of the visit with my head on her shoulder, being comforted and loved. I hadn't realized I needed it that much. Needed her that much. It's been over three decades since I've been this lonely; I'd forgotten what it was like.

She'll be OK -- she seems to be settling in, making friends and having conversations with anyone who comes in the room. I'll be OK, too, but LOSCON is going to be weird. It'll be my first gencon ever without my Cat. If you see me, feel free to come up and give me a hug.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

Colleen is now residing at the White Blossom Care Center, 1990 Fruitdale Ave., San Jose, CA 95128; room 104B. The phone number of the center is (408) 998-8447. Her cell phone is still the best way to reach her, though: you'll find the number on the Starport web page as usual. There's no WiFi for patients, but if I can get an access point to their IT guy (currently offsite, apparently) there's a good chance he can hook it up. Yay! I have one sitting at work, left over from a recent upgrade.

Kaiser botched the hand-off. Grump. So although they knew we were coming, there was nobody there to meet us or to tell Kaiser that we'd arrived, and her meds will be an hour late getting to her this evening.

On the other hand, we had a pleasant drive together, and I was there to make sure that she was getting taken care of. (They had to swap places with her roommate, because Colleen is sinister and so has her PICC line in her right arm. Without the swap she would have had no space for the IV pole on that side. We also made sure they knew she was ambulatory, and preferred to use a commode rather than a bedpan.

The staff seems friendly and competent; their head of nursing was suitably apologetic and suitably annoyed at Kaiser over the screw-up. The place is several decades old, a little shabby but, I think, basically sound. (E.g., the wallpaper looks old, but isn't peeling.)

Not clear that Colleen will have access in the room by the weekend, but she may at least be able to get to a public computer and try to catch up. One way or another, we'll have her online by this time next week.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

Sometime this afternoon we're going to move Colleen to a skilled nursing facility, White Blossom Care Center on Fruitdale Ave. in San Jose. It's a short walk from the Younger Daughter's school.

She's staying on IV antibiotics for another two weeks, and next week she'll be seeing a specialist in San Francisco. It is currently suspected that the fistula is not due to her Crohn's disease but more likely a consequence of either her hernia operation two years ago, or her bout with diverticulitis 15 years ago. A previous surgery, in any case. So Remicade is on hold, but things still look hopeful. More so, because if it isn't Crohn's there wouldn't be any reason not to fix it surgically.

More news, including contact info, as it comes in. Meanwhile, her cell phone still works.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

Saw Colleen this morning and evening; both times she was out of bed and sitting in her chair. This evening she was wearing her kitty-cat dress; we walked the loop around the nursing station. Then I sang: "The Band Played Waltzing Matilda", "The Fans Sang You Bash The Balrog", "Desolation Row", and "Quiet Victories". (This morning was "The Mary Ellen Carter" and "Lilly, Rosemary and the Jack of Hearts", IIRC.) Got a few compliments on my singing, and left a small stack of CC&S cards at Colleen's request.

They've added something to her pill salad to go after the yeast infection that she always develops when she goes on antibiotics.

Had a nice long talk with the Younger Daughter this morning -- she had mis-set her alarm for a 5pm appointment. Well, more her chattering at me than the other way around, but I don't mind. Need to do that more often. OK, I never did get the hang of teenage girls, but I'm doing a lot better now than I did back when I was a teenage boy.

Missing Colleen is interesting, because it's not really very specific most of the time. Instead, a generalized loneliness hangs in front of everything, like a scrim. I've noticed this effect before.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

As it turns out, Colleen is not going to be moved to a nursing home next week. They're going to try Remicade,

... a drug used to treat autoimmune disorders. Infliximab is known as a "chimeric monoclonal antibody" (the term "chimeric" refers to the use of both mouse (murine) and human components of the drug i.e. murine binding Fab domains and human constant Fc domains). The drug blocks the action of the pleiotropic proinflammatory TNFα (tumour necrosis factor alpha) by binding to it and preventing it from signaling the receptors for TNFα on the surface of cells. TNFα is one of the key cytokines that triggers and sustains the inflammation response.

Before they can start, though, they have to run a tuberculosis test, because it's an immune suppressant. Makes things like TB flare up. Anyway, they have to read the test Tuesday and Thursday, so she's probably in the hospital at least through the end of the weekend. If it works, it might shorten the time it takes for her to recover. Well worth the risks. (This page on the Remicade site has a good summary of how it works; scroll down for the warnings. Fortunately she'll be in the hospital for the first dose, so they'll be able to watch her more carefully for side effects than would be possible if she were an outpatient.)

Anyway, it's potentially a very hopeful development.

The household has pulled together; the kids and I are coping pretty well. More on that later, perhaps.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

Went in to visit Colleen about 11am, so as to be there around noon when her case manager was due to show up. Along the way we were assured by several doctors that she wasn't about to be sent home any time soon. In particular, she will emphatically not be coming home before Thanksgiving, so LOSCON is still on. We won't need the second room, though; overall we'll save $400 or so on room and meals.

(It's not clear just what or who was responsible for the miscommunication -- or more likely idiocy -- that had them setting things up for a Sunday release, nor which of the various people she cried or ranted at put the brakes on. But it seems to be taken care of for now.)

Sang "The Mary Ellen Carter" (my choice), "Wheelin'", and "Quiet Victories" (at Colleen's request).

She will be going to a skilled nursing facility, definitely no sooner than Monday; most likely Tuesday or Wednesday. If we're lucky, there's one very close to our house -- the only questions are whether it has beds and whether it can handle TPN. Kaiser covers 100 days of skilled care per year -- the case manager wasn't clear on whether that was per calendar year or per 365 consecutive days, but it probably won't matter in this case.

When she's no longer at the stage of needing 24-hour skilled care, we'll get training in using the equipment and so on before she'll be allowed home. I've seen the take-home pump; it's in a bag that can be carried as either a shoulder bag or a backpack. It would, at least, let her get around the house using the walker. We'll also get training on the ostomy bag (for the fistula). She'll be getting a home-care nurse initially, then go in for regular appointments at the wound care clinic. A hospital bed should only cost about $20/month to rent; not clear whether it would fit in the sewing room.

(I'm mostly making notes for my own benefit here, so that I can make sure they haven't left anything out.)

She's in good spirits, and looks and sounds healthier than I've seen her in weeks. Maybe months. She also hasn't needed any morphine today, which is good.

Thanks, by the way, to [livejournal.com profile] chipuni for his visit today, and to [livejournal.com profile] carmiel for the bear and good conversation yesterday.

Colleen, like me, favors getting a split adjustable bed for our bedroom as a longer term solution. I'll miss the lovely oak bedstead that I made a little after we were married, but it'll give us an opportunity for some much-needed and long-delayed cleaning.

Since I will be going to LOSCON with the kids, I obviously won't have Thanksgiving weekend for cleaning. Depending on timing I may have to take some time off work. Hopefully I can do a little every day or so. We'll deal with it.

mdlbear: (flamethrower)

OK, so it looks like they want to send Colleen home tomorrow. We're dealing with the US health care don't give a damn system here, so the probability of changing that is nil. At best we might be able to fight a delaying action, but even putting it off until after Thanksgiving is unlikely. It's not like they have souls or anything.

(Update: 11/22 2pm She'll be moving to a skilled nursing facility, no earlier than Monday or Tuesday, and will stay until it's safe for her to be at home with less than 24-hour care. Apparently the doctors who she spoke to this morning were unanimous in saying that she couldn't go home yet. No telling where in the chain of command the idiocy was located. Kaiser covers 100 days/year of skilled care. Renting a hospital bed for when she does come home will only run some $20/month, but see below for a better long-term solution.)

Here are the major problems:

  1. It's 50 feet from the bedroom to the front door. Sometimes she needs to use a walker for that.
  2. Family members are in school or at work much of the day. If she can't be left alone for a couple of hours at a stretch, or needs someone closer than a half-hour drive on call, we're simply hosed. We do not have long-term care insurance.
  3. The bed is too high for her to get safely in and out of.
  4. The toilet in the front bathroom is too low for her to get safely in and out of.

Here are some possible solutions and side-notes:

  1. If there's a kind of pump that hangs on a shoulder strap, or an IV pole we can attach to the walker, she can get around the house safely by herself. This may require hardware hacking on my part.
  2. I can work half-days from home; Kat can take over in the afternoons. Still, if she needs someone closer than half an hour -- and preferably an hour -- away all the time, I don't see how it would be possible. There are errands, shopping, dentist appointments, taking the kids to school, you name it. The friends most likely to be free to help don't have cars.
  3. She can use the airbed in the sewing room temporarily. Longer term, I can set up a hospital bed either in the sewing room (which is really too small for it) or in the part of the living room that used to be the master bedroom. It already has curtains for privacy; I suppose we could put the wall back up at some point and make it a guest room. I've been thinking about that anyway.
  4. We need a higher toilet in the front bathroom anyway. And grab bars in both bathrooms. Short term, if she's in our bedroom or the front, she can use a commode; that would require clearing out space in our bedroom, but that's another project that's been put off too long.

Another possibility longer term is simply replacing the bed in the bedroom with a split, adjustable bed -- I know they exist. It would be expensive, but there's not much to be done about that. Right now we're using the space under the bed for storage, but that almost certainly would be less stuff to move than what's in front, which includes a couch and the Wolfling's pile of wedding presents. Those will all go away around the end of January, but hopefully by then Colleen will be better by then.

Longer term, the household is simply hosed. We don't have long-term care insurance (my stupidity about 15 years ago, and not fixable now) and it's inevitable that one or the other of us is going to get sick enough to need 24-hour care. I don't have enough cope to deal with that one -- ever.

mdlbear: (wtf-logo)

Colleen was doing fairly well when I saw her this evening: bored, but getting resigned to a long stay. But now, it seems, they are getting ready to send her home with some kind of portable IV pump. WTF??!

Update: 11/22 2pm She'll be moving to a skilled nursing facility, no earlier than Monday or Tuesday, and will stay until it's safe for her to be at home with less than 24-hour care.

OK, I know it's possible, in theory. People do it -- I've seen people walking around with PICC lines, now that I know what to look for. BUT: she can't care for herself at home -- she isn't even able to walk the distance from the front door to the bedroom by herself at this point -- and there isn't going to be anyone home during the day to care for her. We're going to be gone during Thanksgiving weekend. The bed's too high for her to get in and out of safely. She needs a walker when she's this weak, and she can't handle both that and the IV pump.

And when something inevitably goes wrong, it's an ER visit.

They don't even know at this point whether it's going to start healing or whether she's going to need surgery. I have no idea how long this is likely to go on. Or what to look for to see whether anything is going wrong.

The last time they sent her home too early it was a freaking disaster. The time before that it was merely a nightmare.

NOT a happy Bear.

Update: Saturday 08:30 It looks as though they're going to send her home tomorrow. It's probably going to be impossible to fight it, so my plan now is to ensure that she can use a walker or a wheelchair without having to also deal with a pole full of IV crap, make sure it's safe for her to be home alone for most of the day. We'll either have to cancel LOSCON or arrange for someone to stay with her. She may have to stay in the sewing room for a while if the bed is too high.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

Colleen's room at Kaiser has good cell phone reception, thankfully (number on the Starport web page, but no Wi-Fi.

I was thinking seriously about getting her an Amazon Kindle (using the money saved by not needing a second room for Loscon), but it doesn't appear to have a general-purpose web browser (you can download pages and email them...), and they quote a delivery time of 3-4 weeks. Scratch that idea.

A smartphone is really tempting. There are two possibilities there: add data to our current AT&T family plan -- really only an option if I'd be able to switch it from her number to mine after she's out of the hoosegow hospital. Or that G1 I've been lusting after... Still an expensive committment.

Actually, the price on a T-Mobile WiFi router looks really attractive. Except that as [livejournal.com profile] asavitzk points out, it's bridging in the wrong direction: VoIP-phone to DSL rather than a cell-to-WiFi bridge. Foo. I've seen the other kind, but neither T-Mobile nor AT&T is selling them.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

Colleen is now ensconced in her new room (4319) -- it's closer to the elevator, for what that's worth; the view out the window is a blank wall; there's good cell reception but, as usual, no wi-fi. They should be able to wheel her to someplace where she can use her laptop, though.

She got her PICC line in (for IV feeding) about 4pm, and was about to get fed as I was leaving. I read the user's manual for the PICC -- slightly scary. (It stands for Peripherally-Inserted Central Catheter, in case you were wondering.)

The fistula appears to have gotten somewhat bigger since Monday, they will wait a week to see if it starts healing properly before deciding whether to repair it surgically. Grumph. I'm not quite as worried as she is at this point, but apparently she's not exactly a straightforward case. Trust our family to be interesting -- in the sense of the old Chinese curse.

Please don't bring her anything to eat or drink; she can have the occasional hard candy if it's clear and not artificially sweetened. Flowers are good.


One amusing quote from yesterday: we were casting about for the best phrase to describe [livejournal.com profile] chaoswolf's role as interim alpha female in the household, and I simply couldn't resist "beta bitch." She took it in good humor -- with a wolf persona she can't very well argue that it's the wrong term. Colleen got a kick out of it this morning, too. So that's official now.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

Just got the word that Colleen will be moving, sometime in the next hour or so, to room 4319. Being on the fourth floor it should have good cell reception; WiFi is, of course, anybody's guess.

She's in good spirits according to her friend Marty (listed as her sister for visiting purposes); M only works mornings, so will be visiting Colleen most afternoons. (Some of the good spirits can be attributed to the good drugs, but we're not complaining. Morphine is Good Stuff.)

(Background: Colleen is in the hospital for what's looking like a 6-week stay, with no food. Flowers are always welcome. See this post for more detail, and the Starport web page for up-to-date contact info, including room#.)

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

(Background: Colleen is in the hospital for what's looking like a 6-week stay. See this post for the previous update, and the Starport web page for up-to-date contact info, including room#.)

The bottom line is that it will take about six weeks for Colleen's intestine to heal. They can't remove the bad part surgically because repaired segments tend to turn into problems down the line. Can't win, in other words.

As of this morning she was rather grumpy. It's well known that grumpy old people survive better, so I'm rather encouraged by this in a backhanded sort of way.

This morning she had just gotten the news that they were going to move her to a different room, but as far as I know it hasn't happened yet -- I'll post when/if it does. Hopefully the new room will have Wi-Fi as well as cell phone service (which she does have, fortunately); I'm also bringing in a travel router in case Kaiser's IT staff need something trustworthy they can plug into their LAN.

Now that we've sort-of gotten over the shock, the household is starting to adapt. I'm proud and delighted at the way our [livejournal.com profile] chaoswolf has stepped into the role of interim alpha female in the household, taking things like phone calls, Wednesday pizza, grocery shopping, and transportation arrangements in stride. Kudos for our Wolfling daughter.

I've been adjusting as well, working hospital visits into my schedule again, and changing my online priorities. I'll still keep up with my friends list, but will probably make fewer comments and spend less time active on IM.

I'll be heading out to see her in a couple of minutes. More later tonight.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

Saw Colleen briefly this morning on the way to work, to say good morning and drop off her cell phone and some clothes to go home in. My boss promptly sent me back home (with my laptop, this time); I had some lunch, fielded a few phone calls, picked up her laptop, a vase with our last rose in it, and some more books for her to read.

As it turns out, she won't be needing the going-home outfit for a while.

Several weeks.

Medical TMI. Really. Her intestines need time to heal, meaning no food at all until they do. )

A month or more on IV nutrients sounds like a hell of a crummy way to lose weight. OTOH you could spend a month at a spa and not have as large a room -- the hospital is brand new. Worlds better than the last time she spent multiple weeks in a hospital about a dozen years ago.

She has no net connection at the moment -- there doesn't appear to be wi-fi at that end of the building. There are, however, half a dozen RJ-45 jacks, so I'm hoping they can do something to get her connected. She does have a VCR; didn't check but hopefully it also plays DVDs. You'll find her cell phone number on the Starport web page.

The timing means that she won't be going to LOSCON -- the kids and I will go. It also blows her hoped-for job at Penzey's new store in Menlo Park out of the water; maybe there will be something there in the new year when she gets out.

The fullness of it all hasn't quite hit yet, but at the moment I am not a happy Bear.

mdlbear: the positively imaginary half of a cubic mandelbrot set (Default)

Colleen went to bed almost immediately after dinner; she got up about 9:45 and found blood and pus leaking out of her belly button, where she'd had surgery for an umblilcal hernia about 3 years ago. She's currently at Kaiser getting a CAT scan (pun intended) and antibiotics. Sent me home about an hour ago.

When I left she was chipper and cheerful, just from knowing that she was being taken care of. She'd been in pain from this thing all weekend, and deeply worried not knowing what was causing it.

I'll see her in the morning after I take the kids to school.

7:53 update: She's being admitted to the hospital; Kaiser Santa Clara, room 1359 (first floor). I'll be bringing her cell phone over sometime around 9:30.

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