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Feb. 1st, 2010 11:00 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
whitereflectionIt has been a hell of a day. Please bear with me. Need to get it out of my head.
First thing, my cousin got a report filed on the one RN. Don't want any sort of disciplinary thing, and she did seem intelligent and decent, but she's got to be educated that you don't get argumentative with patients' families.
Second thing, the bigger thing. We've been seeing...what seemed to be indications that my aunt was somehow responding to stimuli, which when the RN had made certain comments and gotten argumentative with my Dad and cousin, combined to get us panicked that something was going on with my aunt. Conferred with her doctors this morning (surgeon, nephrologist, later respiratory one).
When they did some checking in detail on her--she *IS* responding to stimuli. Like if they told her to squeeze a hand, she would. They ran labwork, and fucking found that her creatinine levels are lowered, and her kidneys are at least somewhat functioning. You cannot imagine what things were like today. Told days ago that she was in renal failure and lung failure from adult respiratory distress syndrome, and somewhere in the last 48 hours her kidneys started functioning again?
She's on IV fluids again, with dextrose to help her blood sugars. They've got her on a bunch of antibiotics since her white blood cell count's up and she's feverish (very much so at times). And damned if she doesn't open her eyes a freaking bunch. She's not lucid or coherent. But she's becoming more alert, and is seeming to attempt to talk (sometimes it sounds like she's making words, sometimes you can sort of hear 'okay', but mostly it's just garbled nothing). Sometimes if you talk to her it seems she's responding, other times she's like...making vocalizations at the ceiling, like she's seeing things or half-dreaming?
Not making any sense with this, but these are the things that are running through my head. First, when we were freaking out last night that she might be aware, that we weren't allowing her to die but causing her harm, *we might have been right*. This is freaking me the *fuck* out. We don't know yet if she's going to continue to improve and become lucid as her high sodium blood levels are lowered with the fluids or as her fever/infection is addressed by the antibiotics. Or if this is a temporary improvement and she'll backslide to a couple days ago and get worse. OR if there's brain damage that's happened at some point and this is the state she'd be in permanently. We don't *know* anything. But what if what we did *made it worse*? What if this process damaged her so that when she did unexpectedly start to pull out of renal failure and ARDS, that we've caused other damage? Especially to the brain?
So on the one hand. She is at the moment pulling out of what was assumed to be a fatal combination of renal and lung failure that usually begins a multi organ failure cascade. One that one doctor said studies have shown in the Vets Adminstration that combo to be basically 100% fatal, and in private sector a lesser but still extremely high percentage. It's incredibly rare, and even her surgeon is saying this is 'uncharted waters' for him. On the other hand, I'm not sure it's safe to hope. We don't know if she'll keep getting better, or if semi-lucid is it, or if it's a temporary upswing. Or if something else will fuck it all up again. I've never felt so goddamned confused in my life. It's like we're all sort of frozen holding our breath, waiting to find out if we should be celebrating, continuing to grieve, or facing some hard, hard choices that her living will doesn't quite address.
And even if she does go fully lucid, there'd be a huge recovery and convalescence again--with the knowledge that this reconstructive and exploratory surgery that started this all found the ovarian cancer has aggressively metastasized. So yeah. I don't know. I don't know what to think. None of my family know what exactly to do with this yet. Even potential relief/happiness would be colored by bad, bad things coming. I guess the next 24-48 hours will give us some clue of what exactly to be bracing for. And I know at the least it could be a second chance to do and say some of the things I've been regretting so much this past week, considering I'm so worried about what state she'll be in physically, mentally, and emotionally, I'm not yet able to feel any sort of relief/gratefulness for that either. Just sort of ill with worry and uncertainty.
And then there's feeling crappy at myself for being all tired of alcohol foaming my hands constantly, being at the hospital from morning til night, cafeteria food, and being around so many people so constantly. Hello, stupid to be getting tired of very minor inconveniences, Diane. I mean, this person you care for is going through the roughest thing you've personally ever seen, so you can take a week or maybe couple weeks of dealing with inconveniences. Dumbass self. (Yeah, tired. We all are. I didn't even read a thing today, and dozed a lot.) Am even stewing about how I'm a week behind on comments/email, which is a dumb thing to be worrying about. But still.
Anyway. Enough. On a totally unrelated note (see, I can talk about other things), Mom has become a massive Muse fan. She is an awesome mother.
[Edit: One last thing that's bugging me, that I mentioned to some family member or another earlier today. Why was it *US* that had to notice she'd changed? Why wasn't there more doctor checking, even though she was in comfort care (ie being allowed to pass on)? Why weren't they you know, keeping an eye on things, just in case something like this might happen? What if there hadn't been people like us around to notice the changes? Why weren't the doctors being more active to notice "Hm, there's response to stimuli. There's kidney output. Maybe something's changed, we need to monitor this." Or the nurses and aides--why weren't they communicating to the doctors that there were changes occurring, maybe they should look further? Why was it us that had to motivate this?]
First thing, my cousin got a report filed on the one RN. Don't want any sort of disciplinary thing, and she did seem intelligent and decent, but she's got to be educated that you don't get argumentative with patients' families.
Second thing, the bigger thing. We've been seeing...what seemed to be indications that my aunt was somehow responding to stimuli, which when the RN had made certain comments and gotten argumentative with my Dad and cousin, combined to get us panicked that something was going on with my aunt. Conferred with her doctors this morning (surgeon, nephrologist, later respiratory one).
When they did some checking in detail on her--she *IS* responding to stimuli. Like if they told her to squeeze a hand, she would. They ran labwork, and fucking found that her creatinine levels are lowered, and her kidneys are at least somewhat functioning. You cannot imagine what things were like today. Told days ago that she was in renal failure and lung failure from adult respiratory distress syndrome, and somewhere in the last 48 hours her kidneys started functioning again?
She's on IV fluids again, with dextrose to help her blood sugars. They've got her on a bunch of antibiotics since her white blood cell count's up and she's feverish (very much so at times). And damned if she doesn't open her eyes a freaking bunch. She's not lucid or coherent. But she's becoming more alert, and is seeming to attempt to talk (sometimes it sounds like she's making words, sometimes you can sort of hear 'okay', but mostly it's just garbled nothing). Sometimes if you talk to her it seems she's responding, other times she's like...making vocalizations at the ceiling, like she's seeing things or half-dreaming?
Not making any sense with this, but these are the things that are running through my head. First, when we were freaking out last night that she might be aware, that we weren't allowing her to die but causing her harm, *we might have been right*. This is freaking me the *fuck* out. We don't know yet if she's going to continue to improve and become lucid as her high sodium blood levels are lowered with the fluids or as her fever/infection is addressed by the antibiotics. Or if this is a temporary improvement and she'll backslide to a couple days ago and get worse. OR if there's brain damage that's happened at some point and this is the state she'd be in permanently. We don't *know* anything. But what if what we did *made it worse*? What if this process damaged her so that when she did unexpectedly start to pull out of renal failure and ARDS, that we've caused other damage? Especially to the brain?
So on the one hand. She is at the moment pulling out of what was assumed to be a fatal combination of renal and lung failure that usually begins a multi organ failure cascade. One that one doctor said studies have shown in the Vets Adminstration that combo to be basically 100% fatal, and in private sector a lesser but still extremely high percentage. It's incredibly rare, and even her surgeon is saying this is 'uncharted waters' for him. On the other hand, I'm not sure it's safe to hope. We don't know if she'll keep getting better, or if semi-lucid is it, or if it's a temporary upswing. Or if something else will fuck it all up again. I've never felt so goddamned confused in my life. It's like we're all sort of frozen holding our breath, waiting to find out if we should be celebrating, continuing to grieve, or facing some hard, hard choices that her living will doesn't quite address.
And even if she does go fully lucid, there'd be a huge recovery and convalescence again--with the knowledge that this reconstructive and exploratory surgery that started this all found the ovarian cancer has aggressively metastasized. So yeah. I don't know. I don't know what to think. None of my family know what exactly to do with this yet. Even potential relief/happiness would be colored by bad, bad things coming. I guess the next 24-48 hours will give us some clue of what exactly to be bracing for. And I know at the least it could be a second chance to do and say some of the things I've been regretting so much this past week, considering I'm so worried about what state she'll be in physically, mentally, and emotionally, I'm not yet able to feel any sort of relief/gratefulness for that either. Just sort of ill with worry and uncertainty.
And then there's feeling crappy at myself for being all tired of alcohol foaming my hands constantly, being at the hospital from morning til night, cafeteria food, and being around so many people so constantly. Hello, stupid to be getting tired of very minor inconveniences, Diane. I mean, this person you care for is going through the roughest thing you've personally ever seen, so you can take a week or maybe couple weeks of dealing with inconveniences. Dumbass self. (Yeah, tired. We all are. I didn't even read a thing today, and dozed a lot.) Am even stewing about how I'm a week behind on comments/email, which is a dumb thing to be worrying about. But still.
Anyway. Enough. On a totally unrelated note (see, I can talk about other things), Mom has become a massive Muse fan. She is an awesome mother.
[Edit: One last thing that's bugging me, that I mentioned to some family member or another earlier today. Why was it *US* that had to notice she'd changed? Why wasn't there more doctor checking, even though she was in comfort care (ie being allowed to pass on)? Why weren't they you know, keeping an eye on things, just in case something like this might happen? What if there hadn't been people like us around to notice the changes? Why weren't the doctors being more active to notice "Hm, there's response to stimuli. There's kidney output. Maybe something's changed, we need to monitor this." Or the nurses and aides--why weren't they communicating to the doctors that there were changes occurring, maybe they should look further? Why was it us that had to motivate this?]
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(no subject)
Date: 2010-02-02 05:28 am (UTC)I'm so sorry for what you and your family are going through. And doctors don't know everything - ten years ago they told us my brother would be dead within two weeks, but he wound up pulling out of a coma and building up his white cell count again. He is still sick, but he's still here...
I am not trying to give you false hope, but take it from someone who has been there - the human body does some fucked up shit.
(no subject)
Date: 2010-02-04 03:47 pm (UTC)(no subject)
Date: 2010-02-02 04:53 pm (UTC)(no subject)
Date: 2010-02-04 03:47 pm (UTC)(no subject)
Date: 2010-02-02 08:29 pm (UTC)I will continue to pray for you & yours, hon. *hugs*
(no subject)
Date: 2010-02-04 03:50 pm (UTC)So ♥ and *hugs* back, and truly, thank you.
(no subject)
Date: 2010-02-02 11:27 pm (UTC)I mean, this person you care for is going through the roughest thing you've personally ever seen, so you can take a week or maybe couple weeks of dealing with inconveniences.
One should think so, right? But what you're going through right now is a phase where the pressure of doing the right thing (= staying by your aunt's side, being there for the rest of your family, keeping the rest of your life running smoothly, and last but not least staying sane) that it's really just completely normal to want a break. And I think you should take that break when you need it, and be alone to refill your energy. Even if it's just twenty minutes in the hospital lobby or in a quiet corner. If you need your alone time to stay sane (and I know I would!), then take it and don't feel guilty about it. It's just natural.
(no subject)
Date: 2010-02-04 03:58 pm (UTC)And also thanks for the advice--you're definitely right. Even just one day of being able to be up at the hospital less and home a little more has done a lot. Getting to the things I was putting off and setting aside, as well as just little ways of recharging physical and mental energy, I can feel the difference. Definitely a good thing, since I know we'll need to be there for her again as she deals with recovery and the changes in her illness.
Anyway, ♥ and many *hugs* back.