mdlbear | Done Since 2021-04-11 (Reply)

A week that starts with Colleen still in the hospital on TPN and ends with her in rehab eating real food and walking more every day should probably be counted as a pretty good one. On the other hand...

I've been spending all of my days with Colleen, and most of my nights down at N's place in Seattle. We got in one Kaleidofolk practice Thursday, which was good. Colleen has been getting stronger now that she's getting regular PT, and she's mostly happier, which is also good.

Meanwhile, I have acquired two "new" Pixel 3 phones, one for me (refurbished) and one for Colleen (on sale). I set mine up yesterday -- transfering data from my old phone took much longer than I expected. I then tried to set up Colleen's, and failed miserably. I'll try again this morning. Hers is more complicated because her old phone is really old (Samsung S3 mini) so I can't just move the SIM card (I'll have to activate a new one, which I don't recall ever doing before), and the data transfer might not work at all. Grumble.

I'm still on the fence about whether to install the Nova launcher -- probably worth it, but it would be one more thing that I can waste time twiddling. So maybe not. On the other hand, the stock launcher has some widgets on the home screen that can't be customized away. So maybe.

It's a good thing the tax deadline has been extended. Brain? What brain? I think it got lost in the fog.

Notes & links:

0411Su
& Awake 4am; bed 5:45; didn't sleep
: dreammapper app fails to connect to CPAP
* up 6:06; S=5.4, W=193.6; shower
* 9am call Swedish and ask to speak to a social worker. Loop in N:
/ care coordinator/case manager called back ~11 just as I was leaving for the ferry
assured me that Colleen and I would be involved in any discharge planning etc., and
said she'd get in touch later in the day. AFAICT she didn't.
* (S) mend pants.
@ power of attorney and advance directive forms * printed
* need * extra car key * cash * teaspoon o coffee * Tums for backpack first aid kit
x -maybe- swap chargers for an iGo -- easier to wind cords.
/ Checked in with Colleen. They have her scheduled for an MRI today or tomorrow (so
pretty certain she's not going anywhere today). She's keeping liquids down, including
Ensure; the doctor claims that that will be as good as TPN. I am a little skeptical
because with Crohn's it's possible that it won't be absorbed properly; I'll discuss
that when I get there. -> if she goes home rather than to a SNF, we'll be relying on
weekly tests to ensure that she's keeping nourished. (albumin within correct limits?)
/ she asked for a referral to UW Northwest for a GI/IBD specialist. Case manager said
that the GI team would know who to refer her to.
/ someone from GI team (Jessica??) came by; didn;t quite register
/ 2:28 She's scheduled for an MRI at 6pm. Still tolerating soft food. (custard, for
example) She's going to order pot roast for dinner, but it'll have to wait for after
the MRI. Remains to be decided whether she'll go home or to a nursing home, and
whether she'll continue needing TPN. GI team and case manager still haven't come by.
I need to ask the case manager what they can do about coordinating care with UW
/ 3:55 MRI cancelled -- have asked for a report on why. Told nurse that we're still
waiting for a visit from the GI team. (Which is the team that ordered it.)
/ looked up C's lab results both from the hospital and from WhidbeyHealth. It's
actually quite a bit lower than it has been all year and then some.
& brainstorming questions with N
% 9ish tweaked my back (right side) a little. -> naproxen

0412Mo
* up 5:30; S~=7;
~ wake N in person on my way out of the house (~7am). Questions in Google Doc
@ KEPRO tel:1-888-305-6759 Kepro | Solutions |
Quality Oversight | Appeals & Grievances
/ 8am In the room. She just ordered breakfast; soft/small bites solid. Still on TPN
though, No doctors have been in to see her yet.
/ 9:30 (RN)Hailey weaning off TPN - has to be gradual because it's high in sugar.
Central line dressing was changed last night. Drugs. Plan to change foley; plan PT.
Nurse asked if anyone had spoken to us about discharge plans; I said no and asked to
talk to case manager. ("case manager" is the term they use here, "care coordinator"
is another term for the same person.)
/ 9:58 Hailey and Emma in to change foley. major cleanup needed first - very liquid
-> (hospitalist)Dr. Hansen: stopped TPN - numbers look good. Got N on the line.
endoscopy showed ulcer, needs continuing agressive treatment with (PPI) antacids.
fistula: she needs IBD specialist to agressively treat the Crohn's. Ready to be
discharged;
-> (Case manager)Nancy: home health PT or rehab decision will be made on the basis of
PT evaluation later today.
-> look for IBD specialist at UW; also ask Dr. Hecker for rec.
-> 12:03 PT Linda
# we had a huge list of questions, but things got answered without needing most of
them. N is much better at that kind of conversation than I am; I would have made a
hash of it by going down the list.
: sable turned itself off twice; not clear what that's about. temp ~55 or less,
battery 48%. pjsomething to do with too many tabs? Flaky power connector, more likely
& ordered lunch off the guest menu. Salmon bowl, seasoned black beans, coffee
~ N not available between 1 and 3. If they try to schedule something then, refuse and
tell them that I have to have my advocate on the phone -> not needed
/ Case manager says Careage (now called Regence?) can take her. they're only allowing
outside visits for now, but the weather is going to be good this week. I asked about
Prestige; if they allow inside visits it might be preferable. Maybe tomorrow.
-> asked about transport -> wheelchair van.
: sable is getting _very_ annoying with random power-offs. apt upgrade? nope. fan?
the fan isn't rotating now, but it was earlier and it didn't seem to make a difference
? _something_ rattles when I tilt it. Hmm. Need my tools and a video. Doesn't seem
to happen on a desk, but on my lap...
: contemplating a larger Pixel-3 or 3 xl for me; C likes the size of the Pixel-3
/ moving to room 819 (10 is a surgical floor and she is not (now) a surgery patient)
* text N on arrival in lair -- she worries
* post update#5 today after getting an update
% meloxicam 10:35pm

0413Tu
% awake 4:30ish; back to bed 6ish but didn't get back to sleep
* pay AMEX, Molly
* up 7am; ;
* scored a black, 128Mb, refurb Pixel 3 direct from $G; $323 on AX
/ 9ish call from case mgr. Nurses' station 8th floor: 206-386-6208 -> Prestige
Prestige has in-room visits if both patient and visitor are vaccinated.
-> pickup 2:15 by cabulance, ~$115 billed by snail to the house
-> tel:+1 425-778-0107 Room 501 (0413)T to rehab
* leave RS ~2:45-3; bring: * laundry x drugs
* home for the night. * do laundry; Pick up: * 3 dresses ON HANGERS (other nylon, 2
cotton) * SIM card * 2 pkgs Depends * C's vax card * Oil of Olay from chairside
* clipboard * nail-file; for me: * fluticasone * bite guard x guitar strings
* skip (most) Colleen-related $A subscriptions (somewhere this week, anyway)
% meloxicam 10:40

0414We
* Up 5:30ish; BP=112/73, P=64, S=4.4;
* 15min: laundry -> drier
* pull $writing-project into its own repo for backup while working on it.
% managed to leave my red hoodie at home. May need one.
* BUY stool softener BUY * eyeglass cleaning kit (spray, cloth)
* Spent afternoon a Prestige.
& worked mostly on prj/.config.make, which was really something of a mistake
: the left mouse button on sable seem to be requiring more force lately. Do Not Like
% 9ish sleepy. Not surprising, considering how much sleep I didn't get last night

0415Th
* up 5am;
* a little work on $writing-project
% the drive up was made somewhat harrowing by some badly-done lane changes. Ugh.
? underslept? Perhaps.
/ much happier - able to pick things up off the floor, reach the foot of the bed, etc.
-> (PT)Tina -> 2 walks around the room (OT)Joseph later today
/ meltdown over bed-rails, combined with a melt-down over food (ground, no sides, no
sauce) Some kind of mix-up over orders but compounded by her hearing problem
% ... and spent over an hour trying to get her logged back in on her phone, which got
_me_ dangerously close to a meltdown. Or past it.
/ in the process of straightening out her diet.
Speech therapist (who for some reason does diet too, probably because throat) is
supposed to come in to talk with us hopefully before I leave.
% anxious driving back; stayed on Aurora/99.
* aim to get back to RS around 5pm for music
-> did that, but thought I was running late and didn't get keys made on the way back
* pack - next week in m's room. Drugs to backpack for reloading
* Singing: The Fox, Lord of the Buffalo, Secret of the Crossroads Devil, Ship of
Stone, Weird Load -> all very rusty, but it went surprisingly well and we had a blast
: N gifted me with a lovely old-style sealing wax kit in a wooden box. It had
apparently arrived just before the lockdown.
: sleeping in m's room for the next week.
% meloxicam 10:45

0416Fr * litter boxen (S)
* up 6:14; ; exercises
: N leaving for NY
* email to RainbowCon guests asking if they're interested in doing something this year
/ someone -- dietician or something like that, will be in to talk to us Friday morning
-> actually before I got there, but apparently the only "soft" option here is pureed
-> no, that appears to have been Brooke, the RN
-~ so he's having the doctor change her diet to normal; she'll just have to be careful
/ 11:30ish (OT)Eva (the name on her tag is different and not too closely related)
-> sitting up, brushing teeth, brushing hair; Difficult keeping C on-topic
/ so the speech therapist came in a little after noon while we were trying once again to
explain to Brook what she needed; it's taken care of. Problem is that "soft" is kind
of a red flag for swallowing issues; the ST had to be sure she could swallow.
-> will talk to the dietician. Dietician may be in later.
/ take up C's laundry (looks like just one dress) - do it tonight with mine
@ The Best Vegan Cheeses Defy Expectations - The New York Times
Miyoko's Creamery
/ 3:55 (social services coordinator)Alexia Juarez checking in. Wanted to know what our
living situation is and what C will need in order to go home. Will schedule a care
conference. -> 2pm We.
: V came to visit
: The drive up was much more... interesting... than I would have wanted. The whole long
hill coming up on the Maxwellton intersection was aimed _straight_ at the sun. I hung
a right and came the long way through Langley
* TJ on the way north to Whidbey: chocolate etc.
x office depot for pens and coloring book (flowers or cats)
* spend Friday night on Whidbey
* Colleen's vax card is in the backpack with my glasses * put in her wallet
% got exactly nothing done off this list until after 10. Decompressing wasn't on the
list but should have been
* kindle fire, charging cord and original charger for paperwhite, C's BT
earbuds. instructions in front (as seen fron chair) compartment of letter holder
* jasmine teabags from red wooden box -> turned out to be _green tea_ with jasmine --
the "green tea" was the primary label.
* fetch hoodie -> in red BECU bag with C's stuff (see prev. 2 items)
* put new phone on charger.
% I name guitars, cars, computers, and luggage, but not phones.
x do laundry
* print vegan cheese article for C

0417Sa
* up 7:55; W=198.6, S=; shower
* load drugs (including stool softener: 2/day from Wed on)
* set up new phone -> fairly smooth, but took a lot longer than I expected it to to
download all the apps, and I had to search to find out where the spp drawer was
-> for the record, the app drawer is accessed by dragging up from bottom to top
/ more food order problems. They didn't get her menu, suggesting that either it was
lost or thrown away, or not completely filled out.
~ put configuring Colleen's new phone off to tomorrow. Would probably have managed if
it weren't so ancient -- too old for the standard copy method. If I can't make it
work in the morning I'll try just the SIM swap
% 4:30 feeling defeated and exhausted. Probably more due to low blood sugar than
stress although both are certainly involved
. configure phone home screens -> some things are missing that I expected to find