My grandmother used a small erasable board to take “somebody called” notes: it was a godsend after my tonsils came out. I could use it to write, but also to doodle. It was grey, with a stylus so no danger of messing up the bed if you dropped the pen and if you lose the stylus you can write with a spent ballpoint, or well, with anything that’s got a not-very-sharp point. I bought one when I had a real bad bout of pharingitis, you can get them in toy stores.
Scary stuff; thinking of you both.
He’s still not really able to move his arms more than squeezing or wiggling his fingers. Not to mention, his wrists are still restrained. So no white board, at least for now. He is, however, stable enough to be moved out of his room for a CT scan, which I believe they had planned to do today.
I do get the distinct sense that his medical care is moving away from “keep him out of the morgue” mode. You’re all right, though, in that it’s going to be a long, slow, frustrating slog from here out, for him, for me, and for us.
Any chance he could grasp a pen, and write on a pad placed under his hand? It wouldn’t be the most legible thing but might be a way for him to try to communicate other than “squeeze once for yes, twice for no” or whatever. I once used that method while drugged to the gills for dental work: I understood enough of what they were saying re something being worse than expected, wanted to ask “can you do it today”, managed to mime writing, they gave me a pen / paper, and I got the idea across.
Oh - and “keep him out of the morgue” mode being over, that’s good news even if he still has a hella long slog ahead of him.
Yell at him from the Dope crowd: “West Nile just isn’t supposed to be that big a deal, but NOOOOO, you had to be the center of attention, didn’t you…” (well, do that when he’s feeling up to it and ready for jokes).
I just wanted to pop in and say that although I haven’t been posting, I’ve been following along, rooting for you and Super Schmooper. It may be hard to see when you’re living in it, but from my perspective, it really sounds like his progress is solid and steady. Keep up the good work - both of you.
Today’s update sounds very hopeful. If its any help for you, Bill says that the only thing he remembers from his heart surgery was that I was there. He doesn’t remember much about the first couple of weeks of recovery either (Except for the stairs. He says he remembers being fixated on climbing the stairs. Not because there might be sex afterwards but because his mind got stuck on “climbing the stairs will keep me alive”.)
As I have learned, this is very common and a good thing IMO. I don’t want Bill to remember the pain and fear and confusion. From what I know about you, you probably won’t want your Schmoopie to remember this horrible time either.
I think its time to start wondering about how your home will need changes for his recovery. Will he be able to shower? Do you have steps going to your home? Will he be able to reach stuff that he needs, or should you move it to lower places?
When he finally comes home, your cats might be upset and might even be afraid of the strange smelling man who looks like their daddy.
Sorry, rambling. Back to the subject, more prayers and good wishes are on the way.
Golly, what an ordeal!
I wish you and your’s the very best, purplehorseshoe.
Well, I figured out one of the phrases he kept mouthing: I’m so thirsty. Please. I’m so thirsty. Please.
We were told kindly but in no uncertain terms by the nurse that as long as he has the trach tube he cannot have so much as a single little ice chip in his mouth. It was one of the hardest things I’ve ever done to look my sweetest in the eye as he’s begging for water and say, “No. I’m sorry, I’m so very sorry, but no.”
Oddly, he got a deal calmer after that. He looked extremely disappointed and upset at first, but it was almost like … yes, he’s still thirsty, but at least he was understood. He started drifting off after that, none of us (his parents and I) saying anything, just rubbing his hand or his foot or his head and, wordlessly, changing places.
He was supposed to get a CT scan of his lungs this afternoon but had to have a scope and a lung-vaccuuming by the pulmonologist to remove a big mucus plug that was blocking a large section of his right lung. (He had the same thing done a day or two ago.) Anyway, the scan was delayed for that, so as we were leaving tonight they were prepping him to “go for a ride!” It’ll be the first time he’s left that room in almost two weeks.
Oh, and he’s starting to develop one helluva rash around his shoulders and down his back, although they don’t know yet if it’s a side effect of the antibiotics (he’s on two, and the infectious disease doc is adding an antifungal tomorrow) or the result of lying on his back for so long (my pet theory, although I know they’re supposed to move/roll him every two hours and bathe him every day, and I see no signs that they’re not) or if it’s some recurrence of the rash that originally showed up from the West Nile that landed him there in the first place. Gah.
Thanks for the kind words, Sarah, broomstick, flatlined, picu, whatsit, et al. I saw how long this rambling has been going and started to think I was being very grandiose and self-serving to keep re-bumping my own thread like this.
Oh, yeah, before I forget: your last post put a bit of a chill in me, flatlined, though that’s not at all your fault. Shoe is stubborn if nothing else. When he was first admitted and starting to fade fast (and was having muscle weakness in his back and legs) he’d gotten it through his fool head that if he could just stand up and walk a few steps, he’d be allowed to go home. He kept trying to roll his legs over the side of the bed, not realizing - or acknowledging - that he would have collapsed before his second foot touched the floor.
I’ve been afraid since I was there tonight that now he’s possibly internalized that if he can just **not **have to breathe through a machine’s tubes that he’ll be allowed to have ice water (and to go home!) and as tonight was the very first time his wrists have been untied I really really REALLY don’t want him to go yanking out his trach tube.
Oh, yeah - his wrists were untied 
and I could bring his hand up to my face to kiss it instead of bending over.
If there’s anything I can do please let me know. It’s a long road to recover form something like this but in the end you’ll have your Love back, and that’s worth more than anything in the world.
I have new respect for WNV. god, what an ordeal.
Me too. I have been practically showering my children in bug spray for the past week or so. I am seriously considering not letting them play in the back yard. We have a bad mosquito problem back there that I can’t seem to solve.
Well, they have commenced spraying in Tarrant county now (even the northern areas like North Richland Hills, and the Summerfields area of North Ft. Worth, which is pretty darn close to where I live.) And it looks like they’re covering Dallas and Collin counties pretty well too, with aerial spraying and ground spraying by truck.
Hopefully Mr. Shoe is feeling better tonight. It must be nice for him to have those wrists free - I always hated having my wrists/arms bound when I was getting a C-section, and that was really just for maybe 30 minutes or an hour. Hate, hate, hate.
I suppose they were worried that he would accidentally pull out some important tube or IV somewhere if he had his hands free.
That’s awful to hear, about him being thirsty and not being able to have any water by mouth. It’s one of those base animal instincts, to give your fellow thirsty human a drink if you possibly can. It’s hard-wired into our brains, I think - painful to resist. I wonder if it might make him feel less thirsty if he could have his face wiped with a wet cloth?
Thirst: are they doing anything to keep his mouth moist? As in, there must be something they can do to swab around inside, and also at the very least put something on his lips to keep them from drying and cracking.
Mama Zappa, Yes, he gets full oral care (brushing, rinse etc) every 4 hrs, and a moisturizing oral swab more often than that.
SarahB oh, that is definitely what they’re worried about, and I understand there’s some sort of doctor vs. nurse office politics type crap, where one side is getting pressure to cuff and the other side is getting pressure to remove cuffs quickly. Considering that the day before he was moved to ICU, he yanked out his arm IVs, I’m OK with him being restrained if anyone in charge feels the need; the thought of him pulling out his throat trach is frightening. There’s talk of putting in a stomach stoma to feed him that way, instead of through the nose tube, and Og Almighty forbid he yank that out … assuming they do it. (Day by day, and all that.)
I’m only awake and posting now because as I was lying down, congratulating myself on going to sleep early, buzz buzz buzz unknown local number “… Hello … ?” Authoritative-sounding nurse identifies herself, says they were getting ready to move him down to the next floor for the scan and his oxygen numbers (saturation, etc) plummeted and he has another mucus plug and they’re going in for another suctioning session. They’d already started giving him Mucinex to thin it but it either hasn’t kicked in yet or isn’t strong enough and am I okay with them starting the suctioning? Do they have my permission?
Yes, YES, do what it takes to make him healthy and breathe better, yes, you have my permission. Yes. Yes.
Shit, when people first starting dying in the US - what, five, six years ago, the first big outbreak? maybe seven? - it was just a few here and there and it was always ALWAYS “elderly frail persons with serious underlying health conditions” and it seemed like (please don’t tell me I’m going to hell for this, I’ve long ago called ahead to book a reservation) the WNV shit was a way to … pick off the weak, sick, elderly limping at the back of the herd.
Not a 31-year old with a relatively active job, good health etc.
Not that he’s dead. ( 
) But without some incredibly serious and constant medical intervention and supervision, yeah, he woulda been.
Sorry, sorry …
("It’s my thread, and I’ll multi-post if I want to, multi-post if I want to … ")
I’d wandered off from the computer, but a thought popped into my head and the mental hamster wheel started rolling and …
I just re-read book 3 of the Game of Thrones series (and yeah, I know not every last human being is enthralled, so you can skip this post if you’re not into it) but near the end, the scene with Sandor Clegane / The Hound coming upon the mortally wounded man fighting for the opposite side, begging for wine? Even that carelessly violent wretch was capable of enough sympathy to send Arya to go get some water to pour into the man’s dying mouth.
Hard-wired. You’re right. With so many tubes and stomas and shit right there I’d be worried to wipe him, for fear of water dripping where it shouldn’t, but I content myself with scratching his nose every time he wrinkles it. Sometimes, he looks like “dafuq are you doing?” but sometimes he does look damn blissful. (The feeding tube is taped to his nose. I assume that’s itchy as hell.)
For the record he’s still receiving separate saline so he’s not dehydrated. Just cotton-mouthed.
Thanks for the update. All the more reason to eliminate mosquitoes from the planet.
I’ve been reading along and am horrified for you about what you are both going through. I don’t ahve anything constructive to say except to let you know that there’s another stranger out there wishing you well.
When I had my stomach tube in I got so “thirsty” that I would take soda, swish it around in my mouth and spit it out. I wasn’t allowed to swallow anything, but I just had to have the feeling of liquid in my mouth.