The Mandelbear's Musings

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.

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.

As predicted, Loscon is being weird. Good, mostly, but weird. Got pounce-hugged by snobahr in the lobby, and much later had a good conversation in the elevator lobby. Spent a lovely couple of hours talking to 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 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.

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.

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.

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.

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.

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 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.

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#.)

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.

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.