Dee En ACE, just like Dolores Reborn wrote. The respiratory therapist probably has experience dealing with this medication with cystic fibrosis patients.
DNase is also known by the names Pulmozyme or Dornase alfa.
Dee En ACE, just like Dolores Reborn wrote. The respiratory therapist probably has experience dealing with this medication with cystic fibrosis patients.
DNase is also known by the names Pulmozyme or Dornase alfa.
Sending more hugs and wishes your way! Heck, if you have access to a printer, get as many goofy and/or pretty pictures of animals, scenery, whatever, and put them up. Change them every couple of days. Gives you something to do and him something to look at besides the ceiling tile p.s. Too bad you’re not near me, I’d come clean your house for you
Also, I’d share this ‘I made way too much’ shepherd’s pie, lol.
I’ve steered clear of this thread because it brings up some pretty vivd memories of the Former Mr Kitty’s multiple ICU stays, times on the vent, and weeks of doctors scratching their heads and throwing up their hands. But I have been sending good thoughts for both of you.
One of tFMK’s last hospital stays was veryveryvery long, and we ended up hand-lettering a sign that said “Hotel California” in nice colorful letters, to hang on his door. Some doctors and nurses were amused, others significantly less so (more nurses than doctors were amused). Maybe you could work on something like that?
I also wanted to mention that I took interferon (Pegasus) for 11 months for treatment of Hep C. Along with oral ribavirin. It ain’t fun, believe me.
Is he still taking it?
** hums “Hotel California” **
He’s off the interferon, and the West Nile virus that started all this shitfest isn’t an issue any more anyway. It’s the antibiotic-resistant bacteria in his lungs (Acinetobacter) and the constant mucus-y buildup in his lower lung lobes that’s the problem now. Dunno about the ribavirin - I don’t think he was given that. They are giving him Xanax, though - dear sweet {deity of choice here} I hope that helps - and we’re hoping that he can get an order for a new swallow evaluation in the next day or two.
I told him I bought a family-size pack of chicken thighs to make a nice rich broth for him and he whisper-shouted through his trach: “I don’t want soup. I want SOMETHING SOLID!!!”
Ever hear someone who can’t speak, scream? I have.
ETA: I also realized that September is almost over (“why the fuck is Halloween candy showing up in the grocery stores already … oh.”) and I took him into the hospital a week and a half into August. The days are noticeable shorter: it didn’t used to be almost-dark when I was driving to his last visiting hour. Nearly two fucking months poooof!. Gone. Disappeared. I have no idea where that time went.
I’d been having lung stuff due to allergies recently, and it cleared up all on its own. As soon as I figure out how to bottle up what happened I will airmail it that way.
In the meantime, sending ‘clear lung’ vibes in your direction…
The day I was checking out of the hospital after my daughter’s birth, I visited her in the NICU one last time. She was on a ventilator. I watched her try to cry.
I went back to my room and did it for her. Yeah. heartbreaking as hell.
On the positive side, at least he’s enough more “with it” now, than he was for such a long time, that he can want it. Poor guy.
If you have access to a good printer, and he likes nature pictures, I can end you a link to my scuba pics..clown fish, sharks, etc. I have a bunch up at the office and they never fail to cheer me up. Then again, they’re my memories.
He could also look at them on his tablet.
-D/a
I don’t post to this thread everyday, but I do send prayers your way on a regular basis.
Some of the things you post just make me want to cry. It must be so hard to refuse your beloved partner water and food.
Anyhow…grab the tablet and bookmark LOL cats. I spent a lot of time there when I was all dazed and confused after my surgery. Which was so minor that I shouldn’t have brought it up…but the boredom was so intense.
Don’t forget to bring some pictures of you, too.
He was sound asleep this morning. Shhhh …
No swallow evaluation until he’s off the ventilator (doc sez they don’t want to risk anything getting aspirated) and he won’t get off the ventilator until his lungs are clearer. So let’s all hope the percussive treatment works. Oh! he’s got a ventilator vest (actually, more of a belt) as well. They added albumen and switched to a higher-protein feeding slurry, so hopefully that’ll help with the hunger.
Aww, dammit. Just got a call that they’ve ordered yet another bronch. This isn’t funny anymore.
(Not that it ever was, of course, but … I dunno.)
purps - major hugs. To you and shmoopie. We’re thinking about you - every day.
Thank you. I’ve written down the names and will ask about it. Speaking of, his aunt has also been in touch with a contact at a pediatric hospital, to try to talk with someone with experience dealing with cystic fibrosis - not because he has it, but because so many of the therapies and treatments are similar.
He’s sleepin’ off the bronchioscopy now. They said they sucked a lot of crud out.
Acinetobacter’s a bitch. Sticky, nasty, and resistant. It’s unfortunately a very common hospital-acquired infection in ventilator patients. I’m sure they’re hitting it with the big guns and they’ll knock it out soon.
If you’re looking for more mood-lifting pictures to show him on his tablet (or print out), try Cute Overload!
Tell him from us that he needs to come up with a better hobby.
Translated to: crap. Hopefully that’ll help with opening things up, at least.
www.theentertainingelf.com is another great photo site.
it is amazing how time speeds and slows when you are dealing with hospital. hours drag during procedures and speed up in between.
Mr. Shoe, keep fighting the good fight please. We’re all pulling for you to get better!
Still sending healing vibes
Yummm! Higher protein slurry!
Tell him to think of it as a small step on the way to a nice steak dinner.
Still pulling for you both.