Yeah, I’m no slob, but you’re right about toilet-scrubbing and floor-mopping not being high on my priority list right now. I’m touched beyond words, though, at how thoughtful everyone is being.
OK, time for your update. He was alert yesterday and today, which is nice. He’s scheduled for yet another bronchioscopy today; the nurses said they lavaged his lungs out three times in a row this morning and couldn’t get much out that way.
Really, the issue now is this: between the pulmonologists, the infectious disease doctors, and whoever the hell else is consulting on his case, they are all kind of doing this now:
and also a whole lotta this:
They’re running out of ideas, running out of treatment options to throw at him, and still have no real idea why he crashed so badly on Saturday or why his lungs are still so #$%&* to begin with. One said flat-out that he can’t remember the last time they’ve seen a young relatively healthy guy take so long to get off a ventilator.
Not that it’s likely to be anything but WNV but hantovirus has now been found in Texas. I hope like heck they get his lungs back in shape and you can both be home curled up together on the couch before you know it.
I totally agree with both wishes. I wonder if we can impose on Lynn Bodoni. She is in the shoes’ location and I thinks I remember her offering to help. She knows a lot of stuff, she might know which cleaning companies have good reps out there.
I’ll send Lynn Bodoni a PM and ask. Of course, I’ll send her a link to this thread. No pressure, Lynn
Might this be the time to ask his docs if there’s another, more appropriate hospital he should be moved to? Or get other doctors involved? If they’re stumped they should be wanting different input, I would think.
And to tell you “Never saw a young man take so long…” etc. From what I’ve read here the answer to Why is obvious…his lungs keep filling up with stuff. That’s why!
I hope I’m not out of line (!) but it’s almost like it’s being implied that Schmoopie isn’t where he should be, because…?
Maybe they’re all going to consult and come up with another line of action tomorrow.
I feel strongly that your sweetie is going to be okay, but have you contacted the Patients’ Advocate? It never hurts and can be a big help sometimes. Don’t let the doctors put the lack of progress anywhere except where it lies, okay? It’s not like Schmoopie is unwilling to cooperate.
I don’t visit MPSIMS much anymore so I’m just now seeing this thread and wanted to pop in and say how relieved I am that even though it’s this long that he’s hanging in there (I was terrified that it would be filled with SFYL (I won’t type it out because I don’t want to jinx anything) posts. I’ll be the Jewish one adding to the healing thoughts pool!
Are you using a Mac or a PC? If you’re using a PC, from the browser click Tools, then Options, go to the Security tab, click the Saved Passwords button, then Show Passwords, and any website he clicked the “yes” button for to store his password for that site will be in there.
I’m kind of addicted to “Mystery Diagnosis” and from what I know from watching it, this post is spot on. Get new eyes on his charts, get him to a different facility, whatever it takes, but if these folks haven’t figured it out, they’ve overlooked something or haven’t thought of something. And if that’s the case, they may never see it themselves (it’s like trying to copy edit your own work; your eye sees what your mind expects to see on the paper or screen and not the mistake that’s actually there), so get someone who will go back to the beginning with new eyes and ideas.
Thanks everyone, and apologies for not popping back in earlier. Just been tired and, really, there just hasn’t been too much to say. He’s stable, mostly about the same, doing a lil’ bit better here and there. His resp. tech is slowly dialing back his PEEP and overall oxygen levels; I believe he’s supposed to try spontaneous breathing this afternoon; and although they have his bed set up to do the shakey-shakey thing (of which he is clearly no big fan - he always gets this blissful AAAAAAAAaaaaahhhhhh expression when it stops) to help keep his lungbutter all loosened up, they haven’t seen a need for any more bronchioscopes or anything like that.
They have, however, started making some noises about his gallbladder ("… that’s really not surprising in someone who’s been this sick for this long…") and did a sonogram of it yesterday to see what his gallbladder and liver are up to these days. Haven’t heard anything one way or t’other. Let’s hope it’s minor and/or no big deal.
Oh, most importantly: **thank you **to those who have sent cards already. His parents always have this weird expression when he opens them and I’m all nosy: “Who’s it from? Oh, it’s {{string of random words}}. Where’s he live? Oops … she?” Anonymous internet stranger friends just don’t make sense to them, I guess. Anyway, it’s nice knowing random folks care, and I appreciate that everyone’s still poking in here for updates.
(Finally: huzzah for me for finally getting that dang iPad set up so he can access it with his own account! Man, I feel ridiculously out of touch with all this newfangled technology… )
I texted him the security Q’s and he texted back the answers … (It was his Apple ID I needed, not a website password. Still, a handy hint that I’m tucking into the back of my mind.)
Today was his aunt’s birthday, so tonight during the last visiting hour we had a wee little party in his room. All her gifts were items he’d picked out knowing she’d want them (and he was right each time … he’s damn good at this, even from his hospital bed). He’d mentioned to me earlier that he hadn’t slept for $%&* the night before, and I found out as I was leaving that he’d specifically asked for a) something to help him relax and sleep tonight, and b) for the nurse to be sure and hold off on giving it to him until after the last visiting hour.
Keeping you in our thoughts, Purple. Not knowing why his lungs keep filling up has got to be extremely frustrating. We’re all pulling for you guys and wishing we could be more helpful.
From what I’ve read here the answer to Why is obvious…his lungs keep filling up with stuff. That’s why!
His parents always have this weird expression when he opens them and I’m all nosy: “Who’s it from? Oh, it’s {{string of random words}}. Where’s he live? Oops … she?” Anonymous internet stranger friends just don’t make sense to them, I guess. 