Aug. 20th, 2013 08:43 pm
kshandra: (Wedding)
[personal profile] gridlore was discharged from Mission Oaks about 1:00 this afternoon. We drove up to his office so we could collect a letter from his bosses, confirming that he has stopped working (SSA requirement to reactivate his previous claim). Everyone was glad to see him; I had to caution [tumblr.com profile] copyx not to knock Doug over with the force of their glomp. ;-)

From there, we made our way home, and I got him installed on the futon with a beer (which I had to open for him, but so what?). He started catching up on three weeks' worth of reality TV while I went back out to get his newest prescriptions filled and collect the laundry I had dropped off on Saturday.

He went to bed about twenty minutes ago, and is curled up with our bears and a book.

I really can't describe how different the apartment feels with him in it.

This, of course, is only the beginning of a new chapter, and not the end of this story. From here, there are outpatient therapy visits and appointments with his primary physician and applications for ALL the benefits and and and. Thank you to everyone who has supported me/us this far; here's hoping the news only gets better from here on out.
kshandra: (Wedding)
Today was [personal profile] gridlore's "community outing" - a chance for him to be up and mobile in something other than a controlled setting, to test his endurance, etc. I met him at Mission Oaks shortly after 1pm, and the physical terrorist (yes, I will call them that forever; the first PT Doug ever had, mumble years ago, introduced himself that way) came in around half an hour later. From there we trundled down to the car and headed off to the local grocery store.

(Pardon me while I digress for a moment. I've been driving Doug's truck since about two days into this ordeal. Getting into my car today, so I had room for everyone, was emotionally painful. Don't get me wrong; I still love my car as much as I did the day we bought it. But it was a shock to realize just how poorly it's actually been running once I had several days in the truck to compare. I've known for months that it needs the front motor mount replaced; it's needed a tune up and a brake job for longer. It had been my intention to use the money that had been going towards the car payment to start taking care of those things once the car was paid off...but there were six other places to put every penny.)

Watching Doug take in the outside world was... *handwaving* A kid watching his first snowfall, maybe. (I'm from California, though, so what do I know from snow?)

We walked around the outer circuit of the store, looking at various and sundry things, then made our way over to the deli counter, where I was No Help At All. The whole point of the exercise was to make sure he can still handle those sorts of interactions...but I've ordered for both of us for so long that I kept trying to jump in. (Particularly as it was my sandwich we were ordering.)

We took lunch up to the register and paid for it, then sat briefly in the store's cafe area so Doug could catch his breath for a bit. But this was, for all intents and purposes, a PT session, so we were pushing him a little. So back outside we went, to try walking along and looking at the other stores for a while. It was a bazillion and two degrees outside today, which doesn't do anyone any favors, so we wound up turning around and heading back to the car before we got to the next storefront.

Back to rehab; the PT had Doug take a few steps along the hallway without his cane, just to see how he was doing, and he was obviously favoring the weak side. So we got him back to the room and got him settled in, and wound up talking MasterChef for five minutes before she left. I stayed a little longer, eating my lunch, then had to get back to work.

I knew I was going to be staying late to make up for the extra time I took at lunch today, but even with that, I got 90+ minutes of overtime, going through everything back to when I left the office on Thursday to make sure nothing had gotten missed. (Of course, things had, but nothing that wasn't easily resolved. It was just time consuming.)

So here I sit now, writing this up instead of making dinner. :-P And then I still have work to do in the bedroom tonight before I can go to sleep - not that I'm likely to sleep any time soon (see previous comments re: a bazillion degrees; I turned the fan on in the bedroom at 6:15 this morning).

Doug "graduates" tomorrow, and that is really a profoundly apt term. We're both excited for him to get out of there...but nervous as hell, because now the Real World starts.
kshandra: "DONE!" written in purple stencil-font lettering at a 45 degree angle (Done!)
I actually had more people show up yesterday than would fit in the room to work. [livejournal.com profile] drewkitty took charge, and the whole process was done - including vacuuming the bedroom floor while the bed was out of the way - in ~45 minutes. People continued to show up after the actual work was long since finished, which meant I got some time to socialize with people I haven't seen recently. Eventually, I told the last of the visitors "I'm going to politely throw you out, now," so I could get some downtime before heading over to visit [personal profile] gridlore again.

[livejournal.com profile] flarechick17 was there, having brought over a stack of coloring books and colored pencils she had been given while she was in the hospital; the three of us watched the rest of the Giants game, then chatted for a while before she left. I stayed perhaps another 45 minutes after that, enjoying a companionable silence with Doug while I worked on Yet Another Scarf and he caught up on the net.

His FIM score has been upgraded to modified independence throughout, so he was able to stand up to hug me goodnight. God, that felt good.

Tomorrow, we have a "community outing" to see how well he can function in a non-clinical setting; I had recommended Affordable Treasures as perhaps the closest to a game store we could get in the immediate vicinity, but Doug appears to have decided on the grocery store. And then, on Tuesday, he comes home. I can't wait to have him back.
kshandra: (Wedding)
This morning we had an 8:30 conference with [personal profile] gridlore's treatment team - the supervising MD, and representatives from the PT, OT, speech therapy, and nursing staff. They were all in agreement that his recovery has been stellar, and that everything is on track for his discharge on Tuesday. When asked his opinion, Doug said that he was ready to come home now, but does believe that he will benefit from a couple more days of dedicated rehab. As we're still trying to get everything settled on this end, it's just as well.

After the conference, Doug took his mother and me on a quick tour of the ward, and we sat with him in his room until it was time for his next therapy session. From there, she followed me back to the apartment to help clean the living room, so Doug has a place to sit once he's home again. I told her before we left the facility that I was feeling particularly fragile about the state of the house, and the first words out of her mouth were "I'm not going to judge you; I just want to help." (I still didn't let her see the bedroom.)

Since she left, I put in an online grocery order to be delivered on Sunday (so it doesn't conflict with tomorrow's work), and have been working away at the bedroom to the best of my ability. I've been trying to follow the 20/10 method, but it's probably been more like 30/60. Even at that, I've managed to pull together a truly frightening amount of laundry; a generous contribution from one of Doug's Traveller Mailing List acquaintances means I'll be able to send it out to be washed, so that's one less thing on my plate. (Then I just need to figure out where to PUT it all when it comes back...that's the one major problem with this apartment, a complete lack of storage space.)

I don't think the bedroom's going to be in the state I truly wanted it to be by the time people start showing up tomorrow, but I'll at least have all the trash off the floor, and people ought to be able to move around. For now, though, I really ought to eat more than the scant handful of calories I've put in my body so far today.
kshandra: The Burning Man effigy, lit in blue neon, arms by his sides; an orange half-moon is visible over his shoulder. (Default)
Okay, not all the things, but a hell of a lot of them.

I am taking Friday off from work; we have the conference with the treatment team in the morning, and then I am devoting the rest of the day to prepping the bedroom for furniture moving. (If anyone local would like to "adopt" a bag of laundry, there's going to be a lot of it...)

SATURDAY, AUGUST 17 at 1:00pm, I am looking for as many people as possible to help me rearrange the bedroom furniture. A couple of people have sponsored pizza to go along with the beer, so I can feed whoever shows up.

In the room are the following:
  • A queen size bed w/headboard
  • Two matching nightstands
  • A matching 6-drawer bureau w/attached mirror
  • A 3x3 shelving unit, roughly waist-high
  • A small bookshelf, smaller than the shelving unit

Currently, if you are standing in the bedroom door, you are looking at the foot of the bed; [personal profile] gridlore's side of the bed (and the bureau) are to your right, with very little maneuvering space between them. I want to swap the bureau and the bed, so Doug's side of the bed is closest to the door with no obstructions.

If you can make it to Santa Clara on Saturday afternoon and haul things around, please contact me privately for the address.

And thank you.
kshandra: (Wedding)
...also known as two pictures. Today, [personal profile] gridlore met Tina and Sarah. (Tina is showing off her greatest asset in that photo. Yes, the dog couldn't hold her licker; Doug got puppy kissed within an inch of his life, apparently. She even gave Marty Bear an exploratory snuffle.)

Non-pet therapy proceeds apace; the treatment team conference we would have had on Monday has been rescheduled for Friday. And the whiteboard across from the nurses' station where they track everyone's schedules has a tentative graduation day listed for Doug. (I won't say what, lest I jinx it.)
kshandra: The Burning Man effigy, lit in blue neon, arms by his sides; an orange half-moon is visible over his shoulder. (Default)
Today was entirely too long, but it ended with [personal profile] gridlore back at the rehab facility, and that's what matters most.
kshandra: (Wedding)
Even though it appears no one at that hospital talks to each other. But I'll get to that in a bit.

[personal profile] murphymom and I had a wonderful morning, doing a bit of shopping for her trip tomorrow, grabbing lunch, then going for mani-pedis together. We went to a slightly pricier salon than usual, but the treatment you get there (a hot-stone calf massage as part of the pedicure!) is worth it, IMO.

We had quite literally just gotten started at the salon when my phone rings, and [personal profile] gridlore asks me, "How soon can you get here?" It's something like 1:15, and he hasn't been able to eat yet today, because nobody can tell him whether or not they're doing the *&^%$#@! abdominal CT that they had to reschedule from last night.

I had a second load of laundry I'd been planning on doing once Mom dropped me off, but instead I grabbed my knitting and a bottle of soda for each of us and headed over to the hospital. Mercifully, by the time I got into the truck, Doug had come back from x-ray and had been able to order lunch.

I was pulling into the parking lot when I realized that I'd neglected to grab his earbuds and an extension cord for his phone charger. I figured I could at least get the former at the gift shop, but when all they had was Hello Kitty, I opted against it. :-P Walked out in time to see Doug's mom about 20 feet ahead of me; managed to get her attention, and we went up to the room together. She left after about an hour.

Somewhere in here, the kitchen called to find out if Doug would be placing a dinner order; he let them know he was still waiting to hear on his testing schedule, and promised he would call back before they closed.

Doug's rash has finally subsided enough that he's able to move without pain (the inflammation has been such that his skin was too tight; anyone who has ever dealt with edema knows exactly what I'm talking about here), so PT came by. He actually did two laps to the elevator and back, with a break in between; we had an entertaining discussion about cane sugar Coca-Cola while he caught his breath. The therapist gave him some stretching exercises to do in bed before he stands up, just to loosen the skin while the inflammation continues to subside...and then said that he'd looked steady enough that I'm welcome to take him for walks when I come visit! She asked that we call the nurse the first time we go out, just so they can observe and assure themselves that I'm capable of handling the situation, but that we should be fine on our own after that.

Had a visit from one of the rapid response nurses after the PT session; their team was alerted to Doug's case after some of his recent labwork, and they wanted to check in and make sure he wasn't at risk for sepsis or anything equally special. Satisfied that there was no cause for concern on that front, she took off, promising Doug she would check in with his primary nurse and ask her to find out if he was scheduled for anything else tonight.

When the nurse came in with his afternoon meds, she asked if he had ordered dinner yet. :-/ And then told him to go ahead and do it anyway, because they could always reheat something for him if he did get sent to CT. He didn't call in an order, largely because lunch was late enough and large enough that he really didn't have an appetite, and he was planning to doze on and off for the rest of the evening. I took that as my cue, kissed him goodbye, and left.

Got home early enough to do my second load of laundry, and had just brought it in from the dryer when the phone rang. It was Doug, calling to tell me that they'd moved him to a new room (he'd been in a semi-private with no roommate, and they'd had a patient come up to the ward who needed the extra space for some reason or another). "They would have to do this after they'd already given me my sleeping pill," he said...

And they'd sent him a dinner tray anyway. o.O He never even opened it.

Tomorrow I'm taking advantage of the fact that I'd already said I would be coming in late; obviously, we no longer have the conference with his treatment team at Mission Oaks, but I'm using that time to go to the Social Security office and find out what needs to be done to reactivate his previous federal disability claim.

Now, though, it is past time for me to go to sleep. And so I shall.
kshandra: (Wedding)
...both in and out of the hospital.

My intention for today was to triage the contents of my "floordrobe" preparatory to moving furniture in the bedroom, bagging much of it up for dealing with later and getting several loads of laundry done besides that, then starting to move all the unnecessary items out of the bedroom and into the living room (which I have declared a lost cause for the immediate future) to give whatever strong backs and weak minds I successfully recruit as much room as possible to work with.

Yeah, not so much. Today was the day my body said "You know what? You've been in Crisis Mode for ten solid days, and we're DONE now." Barely managed to drag myself out of bed around nine, putzed around on the net for a couple of hours (though I did make an important phone call during that time), then pulled on something resembling clothing and went down to spend a couple of hours with [personal profile] gridlore. His mother showed up while I was there; I was able to hand over the two scarves I made for our nieces (which were declared belated birthday presents) and programmed numbers into her new cell phone. ("I figured you'd be able to do that," she said, "but I didn't want to ask while you were dealing with all this." "It's a welcome distraction," Doug told her, "let her do it.")

She and I both left shortly after that; I stopped at Kohls to use a $10 off coupon and pick up some more lounge pants/sweats/(fitb) for Doug, then went home and took ALL THE NAPS.

Doug called shortly after I woke up. "I'm drinking Readi-Cat!" he announced with mock cheerfulness. "Oh, fuck, I'm sorry," was my immediate reaction; this stuff has been the bane of his existence since he first got Sick™. (He once seriously asked for an NG tube rather than having to drink it...) The procedure meant he would be out of his room at dinner time, and I happily agreed to bring him whatever he asked for when he was done.

I'd gotten a text message from [livejournal.com profile] flarechick17 while I was asleep, asking if he was ready for visitors yet; we wound up pulling into parking spaces opposite one another, and beat Doug back to the room by about three minutes.

Only to discover that they hadn't been able to do the scan they'd fed him the bloody contrast for. He'd done a swallowing study yesterday (prior to being admitted), and the residual barium from that was sufficient that they wouldn't have been able to get a clear image. There was some debate going on about whether they'd try the CT again tomorrow, or just go for an x-ray; we'll see in the morning what they decided on.

The three of us visited for about an hour; V works in EMS and has been a hospital patient herself, so she has a deep appreciation of what Doug's currently going through from both sides of the process. Then he threw us out again so he could sleep. ;-)

Tomorrow I'm meeting up with [personal profile] murphymom for pedicures and some one-on-one time with her before she flies back East for two weeks with her mother. Hopefully after that I'll come home and be able to accomplish at least some of what I wanted to do today.
kshandra: (Wedding)
Admitted to three different medical facilities in ten days. Two in three days, at that.

Thursday, as I'm sitting next to [personal profile] gridlore in his room, I look over and ask, "...is the rash actually getting worse?" Because I couldn't remember seeing it on his scalp before. He wasn't able to give me a definitive answer, so I let it drop.

4:15 this afternoon, he calls me and says "They're taking me to the ER for intensive dermatology testing." This, I should note, was his second trip to Good Sam today, the first having been to get a set of chest x-rays to determine whether or not the pneumonia was resolving.

Did I mention that we found out on Tuesday he'd had pneumonia that they'd been treating, as well as the stroke? (That makes seven diagnosed cases since he finished chemo in '95, for those of you scoring at home.)

So I look apologetically at the poor contractor who's been covering for me in the office as I flit hither and yon, pack up my stuff and head off, with a quick stop by the house to pick up Doug's wallet so we'd have his ID and Medicare card for paperwork.

It should tell you how bad the rash is that Doug was actually asking for pain medication.

We have had some amazing medical professionals throughout the past week and a half, but I think tonight's ER doctor was my favorite yet. Not only did he bring Doug a turkey sandwich and a Coke when it came up that he had missed lunch during his first trip over and was now missing dinner, he went out to the nurses' station to find a remote for the TV in the room and wound up standing on a chair to get the set turned on and changed to the Giants game.

We found out somewhere in the first couple of innings that they were planning to admit Doug. Transport finally showed up to take him to his room in the middle of the ninth. (Which at least meant he didn't have to see them lose in extra innings.)

Somewhere in there, Doug noted that we should call Mission Oaks, because his netbook was still in his room. Not fifteen minutes later, my phone rang; they'd already locked his computer in the medication room (and had the rest of his belongings bagged up, as well, as I discovered when I drove over after Doug was settled). Hopefully we'll get him back there within a week.

I really need to be three people right now: One to sit with Doug when he needs it; one to stay home and do everything that needs to be done before he comes home again; and one to keep going to work full-time so we have a hope in hell of affording this.
kshandra: (Wedding)
Today was full all around, as [personal profile] gridlore began intensive rehab and I went to my first full day at work since all this began a week ago. (Has it been a week already? Has it only been a week?) I am quite honestly at the point where I don't know where to begin with these posts, so have a series of bullet points.

  • First, a word about shop safety VA benefits. Unless and until the Restore Honor to Service Members Act passes, Douglas sadly does not qualify. (Yes, I know this is does not match what some of you were originally told about the end of his military career. The topic is not open for discussion at this time.)
  • We have a conference with his treatment team Monday morning at 0830. Hopefully, he will have spent enough time with the various therapists by that point that they'll be able to discuss possible time frames with us.
  • We also have an appointment Thursday afternoon at PAMF with a volunteer from HICAP. This appointment was made long ago; I'm going to ask at the conference on Monday if it's possible to schedule an appointment at Mission Oaks, since I'm doubtful Doug will be ready for an excursion at that point (assuming such was even possible).
  • Local folks who have been asking how they can help? Here's your chance. I need several able-bodied people who can come over THIS WEEKEND to help me reorganize the furniture in the bedroom; our bed and dresser need to switch places so we can put Doug's side of the bed closest to the door. (I realize this is ridiculously short notice, but if I tried to schedule this for next weekend, with my luck they'd send him home on Friday.) Drop me a line privately and once I have a sense of when the most people are available, I'll get back to y'all with a day and time. Sadly, all I can offer in terms of compensation is the beer I was supposed to be taking to Burning Man with me; hope you like Pabst Blue Ribbon.
  • I'm sure I have plenty more to add that is both relevant and true, but I don't have the spoons to put it together in a coherent fashion. Have a picture of Doug with a therapy dog instead.
kshandra: Cartoon: Garfield face-down in his cat bed, a single Z in a word balloon over his head (Z)
...and I fear I do not have enough brain left for a proper update. Suffice to say that [personal profile] gridlore is safely ensconced in the acute rehab facility, and I will be visiting him again tomorrow after my first full day in the office all week.

Now I go pass out.

False alarm

Aug. 6th, 2013 05:04 pm
kshandra: Graffiti of hands ripping open a dress shirt, Superman fashion, to reveal the word FAIL (FAIL)
[personal profile] gridlore appears to be having an allergic reaction to one of his medications, so he's staying put tonight while they determine which one it is and make the appropriate substitution(s).
kshandra: (Wedding)
I walk away from my desk for three minutes today...and there's voicemail from my mother-in-law when I come back. She's at the hospital with [personal profile] gridlore, and they're talking about discharging him to the rehab facility.


When the nurse practitioner mentioned it to me yesterday, I was figuring they were thinking end of this week, beginning of next...yeah, not so much.

One of my coworkers was already bringing a sandwich back for me when she gets back from lunch, so I've got to choke that down, then run home and grab a couple of changes of clothes and Doug's cane before blasting over to the hospital.

I'll update the CaringBridge page with the facility address once he's settled.

I may not have a nervous breakdown, after all - I'm not going to have time.
kshandra: (Wedding)
Writing this post is incredibly fucking difficult, because once I put it down in words it will be unavoidably real. But it has to be done. )


Aug. 4th, 2013 09:08 pm
kshandra: (Wedding)
Spent time with [personal profile] gridlore twice today, once around noon, and again just a couple of hours ago. The first time he threw me out after about an hour because "I'm not going to be any fun today;" tonight I sat there in the as-dark-as-ICU-gets room and listened to him sleeping on and off.

It's odd how comforting the sound of snoring can be.

Between naps, he was MUCH more alert (and much less stoned) than he was yesterday, and alternately cranky and depressed about being in the hospital yet again. Finding the right balance between optimism and realism is occasionally challenging; I reminded him today that he was on a ventilator for 60+ hours, so of course his voice isn't going to sound right, and his response was "no, I live in here, and I can tell things are Wrong." [He also asked me at one point how much this is costing; I told him point blank that I refuse to think about that as long as he's still in there, and if nothing else I have experience in writing financial hardship letters.]

The good news is they're moving him out of ICU tonight ("between 8 and 11," the nurse said to me, but nothing had happened yet when I left at 8:30). Doug's looking forward to getting some actual sleep that isn't accompanied by the constant buzz of equipment; here's hoping he gets a compatible roommate. (He's had some real winners in the past, going all the way back to Stanford, when he had one roommate on the cancer ward whose wife spent literally hours on the phone in the room, making international calls.) I do not expect him to be up for non-family visitors for a while, yet; if anything changes, I'll let everyone know.

And possibly the best news of all: When I left tonight, he asked me to sneak him a Coke.
kshandra: (Wedding)
I was at the office printing out copies of [personal profile] gridlore's disability paperwork when my phone rang, and the caller ID said it was the hospital.

It turned out to actually be my mother-in-law at the hospital (she didn't have my cell number). Doug was awake, and they had taken him off the ventilator! And he was all the way back; when she asked if she should call me, his response was "She's going to wonder where I've been for the past three days."

I got to talk to him. I got to hold his hand. I got to feed him ice chips. I got to watch him doze off between sentences, and try to describe some of the fascinating hallucinations he was still having as the sedatives continue to have their way with him.

I have, as you might imagine, been profoundly worried about what neurological damage might be hiding underneath the propofol, but this was very clearly the man I married still inhabiting his skull. Oh, my god, I cannot even begin to tell you how good it was to have him look me in the eye...and groggily say, "I done fucked up." (I did tell him he was no longer allowed to overrule me when it comes to going to the hospital; he pointed to me, looked at his mother, and said "Listen to this woman, for she is wise.")

It sounds as though they're getting closer to a formal diagnosis of what happened, though I'm not ready to discuss it; no reason in forcing the rest of you to go through the same "we think it's this - no, wait, we think it's that" whiplash we've been dealing with since Wednesday night. Once we have something concrete, I'll make it known.

I'll be back in the morning. I'm looking forward to talking with him some more...even if what he says doesn't always make sense.
kshandra: The Burning Man effigy, lit in blue neon, arms by his sides; an orange half-moon is visible over his shoulder. (Default)
  • Ate breakfast (turkey & cheddar on the toast left over from Wed/Thu at Mini Gourmet)
  • Electronically signed the paperwork for ACCC
  • Filed [personal profile] gridlore's disability paperwork
  • Renewed Doug's MedicAlert membership for three years (with thanks to the contributions I've received for expenses) and brought ALL of the information current

Still to do:
  • Take my fucking meds already!
  • Shower
  • Laundry (was supposed to go to [personal profile] murphymom's for this, but I think I may just do one load here to get me through)
  • Stop by work to print out receipt from disability form
  • Hospital; add receipt to chart for his MD to certify the disability claim
  • Stop by Doug's office to pick up his insurance check
  • Meet [livejournal.com profile] plymouth at Hobee's for yarn geeking and dinner

Need to steal Doug's "DONE" stamp icon.
kshandra: (Wedding)
copied from an email to our respective mothers, sent yesterday around 5:15pm )

This and all other updates to the situation are now being crossposted to CaringBridge; feel free to share that link with people who may want to stay informed.
kshandra: The Burning Man effigy, lit in blue neon, arms by his sides; an orange half-moon is visible over his shoulder. (Default)
  • Spent ~90 minutes on the phone with a rep from ACCC - more important than ever with [personal profile] gridlore's sudden illness - and signed up for their Debt Management Program, which will cut the amount I spend on debt service by more than half. Still to do: Electronically sign and return the paperwork; contact the creditors and close the accounts in question (not strictly necessary, but recommended, as it looks better that way).
  • Stopped by my now-former PT facility to return my ID wristband.
  • Took my name off the schedule for volunteer shifts at Burning Man. Even if Doug comes home within the week, I'm not going to be ready to leave him alone by the time I'd normally be getting on the road.
  • Ate and slept regularly.

Still to do:
  • Start the process for Doug's new disability claim. The good news is they've automated the process; the bad news is the site was offline when I checked it earlier today, and I have a blistering headache now that is not conducive to completing paperwork.
  • Write and send off the check for Doug's Medicare Part D coverage; G_d knows he's going to be needing some medications in the immediate future.
  • Write and deliver the rent check (which needed to hold until tomorrow, anyway, for Doug's check to post).
  • Sleep some more.
  • EDIT: Figure out when the *&^%$#@! LJ is going to get its head out of its fourth point of contact and crosspost this already.
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