Wayfare just got home after 14 consecutive days in the hospital (plus 3 of the 5 before that). It’s a serious disease and she’s doing much better than she was two weeks ago, but that’s mostly a reflection of how sick she was — there’s still a long way to go to full health and stamina. As an illustrative example, she can walk a few steps unaided now, but still feels the need for someone to support her going up and down the stairs.
Though it was a long stay in the hospital, she’s glad to be back just in time for the trick-or-treaters. She couldn’t get up and walk to the door each time, and didn’t want to catch anything with a suppressed immune system, so she bundled up under about a hundred layers, added a stethoscope to her face mask and gown to look like a doctor, and planted herself on a chair at the door to hand out treats. Priorities, you know. She’s also amazed that fall waited for her — here in Toronto I still haven’t had to rake yet as most of the leaves are still on the trees, some still green even.
But enough about her. I’m exhausted. Everyone has been great at offering support, especially her parents, who have been there in the hospital with us every day, and picking Blueberry up from school regularly. While we spent hours waiting at the pharmacy before getting to leave the hospital, her mom came over and cleaned everything, and then went out to help restock groceries and hand sanitizer, etc. But there are some things you just can’t outsource — Wayfare really didn’t want other visitors, especially when she was barely lucid and had tubes coming out every which-way. So I went downtown every day, tried to get an hour or two of work done to keep my job, and tried to hold it all together. Near the end of the hospital stay, Wayfare was thanking me for doing all the things, and said that perhaps the worst part of it all was that I had to commute down on the weekends too. And I think that is definitely part of why I feel so worn out right now — at least with big projects that lead to 80+ hour weeks, I get to work from home on the weekends.
Anyway, we’re not quite out of the woods yet. Fortunately, I should be able to work from home for the next little while to be here while not getting fired, and her parents continue to be awesome. We’re going to have to spend a day every week in the hospital for follow-ups to monitor her recovery. Unfortunately (and touching wood, spitting and turning around three times, etc. as I say this), this disease has a staggeringly high recurrence/exacerbation/relapse rate. So almost any instance of Wayfare not feeling well will be a trip to emerg to check things out, just in case. Though she finished her plasmapheresis, her central line will stay in for a few more weeks because of this danger. And that is itself a pain to manage (not to mention the creepiness factor — though in the right light it’s good progress to a rockin’ Borg costume).
And with her energy levels so low she’ll need someone here basically all the time, and it will be a while before she’ll be able to pick up Blueberry from school.
Blueberry has been just amazing through all of this. She’s written/drawn so many little get well soon notes and cards for mommy, and she’s been quite good with me (and fairly understanding when daddy’s patience is a little shorter than normal). And she’s been so good being gentle and helpful and considerate with her mom. One good thing out of all of this has been all the time I’ve gotten to spend with her. I’ve been walking her to school almost every day since she started kindergarten (for other somewhat related reasons), and now I got to pick her up most days too — and will continue to have that for a while yet. Though as much fun as all the daddy-daughter days have been, she’s awful glad to have her mommy home again.
Every now and then my mind wanders to what will happen long-term (particularly through the PF blogger lens). We have a good emergency fund, so I know at this point I’m just borrowing trouble, and there’s enough to deal with now. I’m glad money doesn’t really have to be a big concern, and that we’ve had so much support from family, which gives us the freedom to push these kinds of thoughts off until after the medical stuff is resolved. But still — we are not one of those PF uber couples that can live off just one salary. It’s been a while since I’ve done a detailed budget, but for the sake of argument let’s say that we need about $1.5-2.5k/mo (depending on how much we cut lifestyle spending, and not counting savings) from the 2nd person’s salary to live here. A friend recently moved, so on Facebook I saw the posts about her house and I was like “yeah, we should move to London!” — lower costs of living (nearly to the point of fully living on one salary), and instead of being an hour+ away at work, I’d only ever be at most 10 minutes away (20 if there’s a fucking train crossing) if something happened, and I’d get that much more time with Blueberry on all the days when nothing happened. Of course, then the thoughts spiral to how much help we got from family through this, and they probably wouldn’t follow us out (though Blueberry is the only grandchild on both sides, so maybe??). Anyway, we can put that crazy thought process on ice for a few months at least — and while it may take a few months, Wayfare should eventually be able to return to work.
It was tough trying to keep everyone in the loop. Social media is good for that sort of broadcasting thing, but Wayfare didn’t want me broadcasting too much to too many people online at first. She wanted to write something herself, but was too foggy to be able to write. So many people knew she was “sick” (esp. with cancelled events and the like), but didn’t know she was in the hospital with a serious condition. We were getting messages like “should I bring over soup?” Finally I asked her how much murdering she would do to her friends if one of them disappeared into the hospital for days and didn’t update her, and she let me send a message out on her account.
Other than that I didn’t really provide much detail to too many people — lots asked, and I gave brief answers (or pointed to posts), as keeping other people in the loop much beyond “this is a thing and it is happening, chat later” was not very high on my priorities. The old-fashioned social network also worked well — I told my mom what was going on, who told my aunts, who told my cousins, and on through the phone tree.
I alluded to being short-tempered above with Blueberry (only a tiny bit, but I’m usually super patient with her) — I was much more so with other people. One text message exchange went like this: “Happy birthday!” “OMG FUCK OFF right now.” [exaggerated] Imagine driving to the hospital and your phone pings. Is something wrong? Do you have to stop and pick something up on the way? Is there a safe place to pull over and read it? Is it worth the safety and ticket to try to read it while driving? Maybe just risk the ticket at a red light… Oh great, a birthday wish, like I care about that now.