Things sound great! It must have been encouraging to see the nurse so impressed with how well he’s doing.
Are you taking good care of yourself, bubbeleh?
Hah, KNTourist, I have more than my fair share of Jewish-grandmother-style mothering. 
But yes, and thank you. I got a better night’s sleep last night than in a while. Ironically, knowing that I don’t have to go to work today and can nap off any insomnia tends to … make me sleep better at night. Dammit!
Anyway, he was in a pretty good mood this morning. Wanna know why? His aunts and a few family friends are banding together to BUY HIM A TABLET. Say what?!?
On the one hand, I understand that people want to help but feel helpless (“Can we send him a casserole?” "Well, he’s still on a feeding tube … ") and this gives them a concrete way to pitch in, but on the other hand … damn. Just … day-um. It’s so breathtakingly generous, and such an amazing gift for us when we’ve been paycheck-to-paychecking it all this time. His aunt brought in a little brochure so he could pick out his color (black) and he kept mouthing “This is too much. Too much. Thank you so much but this is too nice…” up at her.
Oh, and his aunt’s neighbor friend was in a similar situation to Shoe years ago (originally young and healthy, found himself on a trach and facing months of rehab) and he said he really wants to come talk with Shoe, let him know what he went through. And, ahem, now that he’s fully recovered, to give him a bit of concrete evidence that yes, things will get better.
(Pool accident, for the morbidly curious: he had dived in, and then before he surfaced, someone dived in after him and landed right on top of him.)
I brought him his Vibram Five-Fingers today. He was asking for them all day yesterday, and seemed genuinely pissed that I hadn’t brought them last night. I kept asking if he wanted the five-finger socks, and he kept mouthing, “No. Not socks. SHOOOOOOOOOOES.” What does a bedridden man need shoes for? shrug Brought them in today. He’s in isolation again - they cultured some bacteria in his lungs (see below) - but when I told the nurse they were washable, and that I could tie them up in a plastic bag and toss them right into the washing machine on “hot” afterwards, he said it was OK and I brought them in. He used to wear them all day at work, and had fairly dextrous monkey toes anyway, so we threaded his toes into each one with surprisingly little trouble. I hope they help stretch and work the little ligaments in his feet a bit, and give him a bit of traction (his ankles kinda slide in a wonky direction sometimes). And, I guess, a taste of normalcy and home …
They called it acetobacter, which I thought was what made vinegar. 
The infectious disease doc said healthy folk don’t get it but it can spread easily though an ICU unit. Coming up positive for it is part of why they swapped out his antibiotics, plus he was developing a rash they suspected might be a new allergy to penicillin-y meds. So, anyway: gloves, gown, mask, full hand-washing in the negative-pressure room next door before going back out into the ICU, no objects that have been in his room can leave without being swabbed by Super High Strength Wipes that have “Warning: not for human skin” all over the canister.
Acinetobacter, I think he meant. Not the vinegar making stuff.
They really like tubes that go into bodies, like catheters, IV’s and trach tubes. Many people have the bacteria on their skin (and those people tend to have fewer allergies, so they may actually be protective somehow) and they don’t cause any harm to most of us. But when they get inside and you’re immunocompromised, like someone who just had a raging infection, then they can get a toehold and be bothersome little buggers.
It can be tricky to treat, because different strains are resistant to different antibiotics, so don’t be surprised if they have him on a constantly changing group of antibiotics for a while until they figure out what kills his strain.
Acinetobacter. I don’t know much about it–just enough to know what kind sounds like “acetobacter” :p.
Thanks, booklover and WhyNot. That’s the word- I knew it was close but a syllable or two off. And, yes, now that you mention it, the doc did say it tends to be antibiotic resistant.
His aunt already bought the tablet and brought it in for him, and he’s already gotten to mess around with it. It’ll be frustrating at first - his point-and-touch dexterity is pretty bad - but boy does he have the motivation! I pointed out the YouTube icon on the home page and told him he doesn’t have to depend on the hospital TV anymore…
I think that will be a tremendous blessing! Remember Hulu as well. Life in the hospital is so amazingly boring!
What a long haul this is for you - sending out more good thought!
The tablet sounds like a great gift. I’m happy that happened. 
It can mean movies, e-mail, books… There may be programs to make typing easy.
Is there a modern TV in the room? I wonder if there’s a way to rig output to it…maybe with an add-on device.
-D/a
Yeah, except now they’re all hassling me for his iTunes account number (so they can do some sort of GPS anti-theft setup? I think? I doubt any of them know … ) which I don’t know, nor the password when he set up the account however the fuck long ago, and clicking “reset password” on the iTunes on our home computer isn’t doing the trick, as nothing is showing up in his inbox nor his junk folder, and I just wanted to take a goddam nap and I can’t find a Post-It or anything with any sort of related info among the crap on the desk, and because my job involves website content updates on a freakin’ template they all think I’m Steve fucking Jobs or something and I appreciate that they did all this but I Don’;t Know The Fucking Apple Number For His ITunes Let ME SLEEEEEEP.
Happy for the tablet, not so happy that you are so frustrated. Turn the phone off and get some sleep.
I am so very happy that its gotten so boring that you are only stressing about a password. Things were much worse.
Quick, someone post after me because Zebra is right. My name is not right for the last post in this thread.
Posted 'cause I agree with Zebra, too!
Fair enough, flatlined, you’re right. Gawd, that post was near-incoherent. All I was trying to say was I wanted to nap on my day off and pissed away the time between his visiting hours trying to get the password reset.
And then … I slept through the next visiting hour. Not so much took a nap as fell into a coma. I didn’t even silence my phone, but slept through the “Wake up! Go visit!” alarm, his parents calling to see if I wanted a lift, everything. Oh, well - saw him on the evening (final) visiting hour. Found a free text-to-speech app for the iPad for him, and his dad put a crossword puzzle app onto it as well. He seemed to be in a decent mood overall.
Here I am, not nagging or anything. Not saying a thing about how exhasted you must have been for that to happen. Isn’t this a nice quiet post? Have you ever gotten such a nice, calm, not naggy post like this before?
I’m so not going to mention that if you don’t take care of yourself, you won’t be able to take care of him. I certainly won’t discuss the fact that you really do need to eat well now. And I would never consider suggesting that you allow your support group do what they want to do…which is take care of you.
No, not me. This is a very nice and not naggy post.
Now, eat some fresh veggies and get some more sleep. And eat a good breakfast tomorrow, poptarts just won’t cut it for you now.
Yeah, what she said. I’m not nagging either.
Y’all are great. And, since I have no Pop-Tarts in the house, it was easy to obey the wise flatlined.
CAUTION: the remainder of this post contains nothing but good news. If you need an excuse to feel shitty and gray and cranky, go somewhere else …
For starters, his chest X-rays show much clearer lungs over yesterday and today. Even better, when we came back at noon, he was in a chair, with a belt around his waist but otherwise sitting up under his own strength. Best of all, the nurse brought a cup of ice chips and water with a spoon, and he ate probably 3/4 to a full cup of them, crunching and crunching and indicating, “more, please.” No gurgling, no choking. I asked the nurse if this counted as a swallow evaluation, and he said it wasn’t an official one, but if it was, he’d have passed, and that he’d note it on his chart for the physical therapist.
And, now: :D:D:D:D:D:D:D:D:D:D:D:D
YAY!!!
That is fantastic news!
purplehorseshoe - feel free to bring good news like that ANY TIME YOU WANT…
-D/a
:D:D:D:D:D:D:D:D:D:D:D:D:D:D:D:D:D:D:D:D:D:D:D:D
Awesome!!!
Oh, that is such good news. Hurray for Schmoopie!
Glad to hear it! Woot!