Guy (stonebender)

[serene]

I haven't had much time to just sit and type lately, so all I've really been able to do is shoot short updates from my phone. Behind the cut is a longish, rambly account of what's going on, for those of you who like keeping track of such things.



BREATHING:

His breathing does this thing where it seems to be stable for a long time, and then it tanks. Once, today, it was really bad, but it turned out to be because there was a leak in the oxygen tube. Thing is, his blood oxygen is supposed to be above a certain percentage on room air before they send him home, so if he goes into distress when the oxygen is off, that's bad.

He was in the hospital for a few days (Sunday to yesterday, Tuesday) with pneumonia, on IV antibiotics and breathing treatments, but the doctor sent him home yesterday afternoon. When he got home, the breathing got a little worse, but he wasn't sure how much of that was the breathing and how much was panic. He had a hard time deciding whether to stay home and see the doctor in the morning or go back to the hospital. I think I talked him out of going to the hospital, and I shouldn't have, because he awoke around 4am barely able to breathe. We called 911, and the ambulance took him to another hospital, where his usual doctor has privileges.

SLEEP:

One of the toughest things about all this is his sleep, or rather, lack of sleep. He's afraid if he falls asleep, he'll stop breathing, and his fear isn't completely unfounded. (He has also had some fear about the gunk in his lungs choking him -- again, not completely unfounded.) This has added up to his being *severely* sleep-deprived. He's gotten an average of about an hour of sleep a night for more than a week, and that's *bad*. I'm hoping they will give him something to help with that, or that his body will just decide to zonk without his permission.

DIGNITY:

Being in the hospital is not a dignified prospect for any of us. When you are unable to leave your bed, use the bathroom on your own (or use a bedpan), push the nurse-call button, or reposition your own head, it becomes a genuine challenge. I cannot stress enough how irritating it is that hospitals are so far behind on getting accessible setups for their patients with disabilities. The one in Berkeley is MUCH better than the one in Castro Valley.

Oh, and I will be happy if I never again run across someone who thinks either of the following things: 1) If you've got a disability, you're generally sickly; or 2) If you've got a disability, I don't need to even think about it in relation to your care or the logistics of keeping you in the hospital. Grrrr.



More later. I'm gonna go eat some actual home-cooked food, yay!

Comments

[wild-irises.livejournal.com]

I love you.

[serenejournal.livejournal.com]

Love you, too, and really appreciate having you around, even when it's not because someone else needs us.

[zpdiduda.livejournal.com]

My thoughts and best wishes are with Guy, with you and with the rest of his family. This sucks the big one.

[wordweaverlynn.livejournal.com]

There are actually people in health care who think those things????

Yeesh.

[firecat]

When the OH got a cochlear implant, even though he had a big bandage on his head and a sign in the room saying "I am deaf, please write to communicate with me," every single one of the hospital staff initially tried to interact with him by talking to him, and acted put out when told they had to write.

[loracs.livejournal.com]

Oh yeah, lots of folks. I have to keep reminding myself we all live in the dominate culture with the same stereotypes about people with disabilities.

And then there's the EMT's who didn't know the difference between MD and MS. One of them actually said, in response to being told Guy had MD, "he's a doctor?"

[darklily1.livejournal.com]

If Serene doesn't mind...I'll add that there are people that think when a woman is having a baby that they are sick. That's a rant for my own journal, I suppose. I'm sending calming thoughts out to that other coast, Serene. Hope everyone gets some sleep soon.

[wordweaverlynn.livejournal.com]

That doesn't surprise me. Being a woman is by definition abnormal to some of these jerks.

[mactavish.livejournal.com]

I'm glad he has folks who love him to take care of him -- and so many!

[marea93.livejournal.com]

You and yours are in my heart; I hope he improves right away. If I could help I would. ~~~vibes~~~ from me and WW.

[sebab.livejournal.com]

Hey, having stopped breathing three times and only havign had it noticed by my MOTHER (not the staff), here's a thought: Are there enough of you that you guys could take shifts for a time during which he could get some sleep? Some hospitals will allow visitors to stay the night if the visitor is unobtrusive and really helpful -- i.e. it means the patiennt requests less of the nurses.

If he knew someone was watching over him, perhaps he would feel more comfortable sleeping well again, at first?

Just a thought, it's really distressing to read what he (and you all) are going through, and hope it improves quickly.

*hug*

[loracs.livejournal.com]

We are scheduling someone in the room with him around the clock. I just left him and he had been sleeping about 20 minutes, taking fairly normal breaths. Now, if they just don't wake him up too soon for those all important "vitals" they take every 4 hours.

[sebab.livejournal.com]

Oh, I hope they leave him alone for a while! Glad he's sleeping.

[serenejournal.livejournal.com]

We're with him 24/7, and when he does doze, he makes sure whoever's with him is awake first. Thank you, though. *hugs* Of all the people on my friendslist, I know you understand the whole emotional gamut of this really well.

[kightp.livejournal.com]

I wish I had the cash to hop on a plane and come down and spell you guys for a while; as awful as this must be for Guy, it can't be a picnic for you and Carol, either, and I'm guessing neither of you is getting much sleep, either.

*fret*

*hugs*

[cassidyrose.livejournal.com]

Thinking of you all.

I have nothing to add except "I hear you". Having helped care for two relatives who spent long periods in the hospital and having an infant in a NICU, I really understand--it pisses me off to no end that individuals who cannot press the damned nurse call button are left unattended by staff with no way to call for help. At least infants are constantly monitored and each nurse only has two babies, but adults are just left to flair. Urgh.

Please send my good thoughts to Guy and Carol and to yourself. And yay for home-cooked food. When caring for catzen's father I ate far too many "meals" from vending machines.

Take care of yourself, OK?

[redandfiery.livejournal.com]

Big hugs, and I'm holding a good thought for both of you!

[klwalton.livejournal.com]

*hughughug* to you and everyone. Just got home from Barry Watch and will probably be back at it tomorrow, which is why I'm checking in so late.

The same attitude that many health care workers have towards the disabled they also seem to have towards the elderly. One day I'll share my rant about what they did to my grandmother, but that's best saved for another day.

[saluqi.livejournal.com]

I have a friend who spent a great deal of time in a US hospital with a very serious necrotising fascitis infection. She said the thing that made the biggest difference to her quality of care was that she had friends and a husband who were watching and asking questions the whole time.

My mother is a nurse, and I fully understand the pressures that health care workers are under in an underfunded system. That must go double in the USA. So I'm not inclined to judge them for making triage decisions, but I also think it's very good that you and his other loved ones are on the spot and paying attention to what is going on.

[autographedcat.livejournal.com]

*hugs* Y'all hang in there.

[nex0s.livejournal.com]

It's times like this I wish I were local. At least then I could make some matzoh ball soup or something for y'all.

Even when I don't comment, I'm reading and "present".

*hugs* to all of you. Guy is lucky to have you all and you're lucky to have him.

N.

[phantom_wolfboy]

Hospitals are terrible places in which to be sick. Lungs are terrifying things to have problems with. Been there, done that, though not as bad as Guy's.

I'll keep my fingers crossed for both of you.

[gremlin44.livejournal.com]

*thoughts*

[epi-lj.livejournal.com]

I really hope that things improve for him soon! This sounds awful. Please make sure that you take care of yourself also, and don't blame yourself for talking him out of going right back to the hospital. I wasn't there, but I would be surprised if you weren't making what seemed the best choice for him with the information that you had available.

[lcohen]

oh honey.

not being able to breathe is totally a panicky feeling. i hope that his breathing stabilizes soon. and that he can go home and be comfortable. and that you can be home and be comfortable.

*home-cooked thoughts*