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Kommienzuspadt
Apr 28, 2004

U like it

FAN OF NICKELBACK posted:

I did make this for input, I just really didn't have a plan for what that input would be or what I do with it. I don't reply much because it turns out there really isn't a whole lot of discussion to have around this.

I work for a bank, I took a month off when this happened and simply spent every waking hour of that month devouring everything that had been written.

At first it seems like you're onto something, and then about two weeks in you find out that everyone is just kind of saying the same stuff over and over again.

1) Anoxic/hypoxic brain injuries have about a three month window to recover consciousness and still have a(n almost inconceivably small chance) of a full recovery or near full recovery. My wife is now at one month and 19 days (48 days).

2) Miracle recoveries only happen in traumatic brain injury as a rule, and even then you'd be wise to very severely temper your concept of the word recovery.

3) In rare instances the damage to a brain manages to happen in such a way that essentially a finger stays on the off switch for consciousness. Metabolism is down and the chemicals that run your noggin are simply out of whack. If that's the case certain pills might work by dicking around with GABA.

4) If this ever happens to anyone you love, have doctors try everything they can to bring the person back within 2 weeks (at most). Do not do what I am doing, I don't even want to be doing what I'm doing, say your farewells and allow them to be the person that were for everybody who wants to remember them.

No matter what or how many stories you read about success and the wonders of baseless faith, know that almost nobody gets to come back. you might get a consciousness, but it won't be them it'll be someone new who you would've handed their body over to.

Do not forget, brain damage does not mean a cute and stupider version of the person you think you're helping. It means psychosis, uncontrollable emotional issues, Physical disabilities that often mean partial use of a single limb, And likely an inability to make sense of that very complex menagerie of insults that I just explained.

You are betting against the house that you aren't going to trap a person in what is quite genuinely a living hell that they are helpless to navigate. You very likely, barring extraordinary circumstances that the doctors will no doubt explain to you, have a less than 10% chance of not leveling some combination of those factors upon that very person you're trying to save. also, know that you will not recognize them as the person that you thought you were saving and there is no caveat to that statement.

PS it's not just pubmed, I actually paid the obscene amounts of money for certain neuro articles/journals.

no matter how cutting-edge the treatment,you're still left trying to unmash potato

All of this rings true and is clearly well researched, but like I said, give yourself a rest. You've done so much. Also, if for whatever reason you do want copies of full articles in the future, just PM me and i'll pull them up through my medical university library's proxy server.

Also for what its worth the very first patient I took care of as a medical student was a 7 y/o girl who had a prolonged anoxic brain injury because she had an peanut allergy and her nanny forgot to bring her epipen with her to a birthday party. I was there when she was brought into the ED and later got to see her again when I was on clinical interlude. She was in the PICU post-op for a psoas release. She was not much better than when I first met her. Very very sad but proof that bad things happen to good people all the time.

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Kommienzuspadt
Apr 28, 2004

U like it

FAN OF NICKELBACK posted:

literally no one in the whole world wants to make the decision as to when you have suffered enough vs having tried hard enough to keep you alive

also no one wants to be your voice for letting you go because that's a seriously awful and lovely place to be in both conversation and internally

just go pay like a hundred bucks and don't do that to people ok

Also FYI you can file an advanced directive 100% for free with your primary care physician, please do this no matter how young or healthy you are.

FAN OF NICKELBACK
Apr 9, 2002

Kommienzuspadt posted:

All of this rings true and is clearly well researched, but like I said, give yourself a rest. You've done so much. Also, if for whatever reason you do want copies of full articles in the future, just PM me and i'll pull them up through my medical university library's proxy server.

Also for what its worth the very first patient I took care of as a medical student was a 7 y/o girl who had a prolonged anoxic brain injury because she had an peanut allergy and her nanny forgot to bring her epipen with her to a birthday party. I was there when she was brought into the ED and later got to see her again when I was on clinical interlude. She was in the PICU post-op for a psoas release. She was not much better than when I first met her. Very very sad but proof that bad things happen to good people all the time.

I may take you up on that, depending on how the next couple of weeks go. No worries about me becoming dangerously/insanely obsessed; there was a place and a need for the furious learning and research early on if only to become a proper advocate in a situation that was mired in emotions--though that's been shifting. At this point the only thing I've really been looking into is high-end therapies and how to replicate them so I can teach it to her parents. I can promise you, for example, that implementing F.A.S.T. therapy made a measurable difference in my wife's reaction/reaction time to familiar voices and reduced the natural reflex to turn toward "unimportant" background noise like machine beeps etc. For all that's worth, but whattayagonnado.

The only angle I see left is drastically migrating adult oligodendrocyte progenitor cells while aiming for increased metabolism and also somehow not causing a tumor. I dunno maybe Metformin? Still though, there's a lot of hurdles with that too.

Stem cell therapy as it stands in its current state seems like it's for the birds tbqh.

As for the little girl, Christ. I can't imagine myself or my wife if it had been our daughter; I mean of course you hang on because the prognosis for a kid who drowns is much different, but still. I know that if the family was on board, I could let my wife go as it stands--it's what she would want, and this whole experience has taught me the some of the value and nature behind making decisions for someone else vs. about someone else.

I don't know I could say the same if it was our kid, it's just a half step over some line that I can't quite identify.

Kommienzuspadt
Apr 28, 2004

U like it

FAN OF NICKELBACK posted:


Stem cell therapy as it stands in its current state seems like it's for the birds tbqh.

I am pretty familiar with stem cell therapy, and your assessment is correct.

FAN OF NICKELBACK posted:


As for the little girl, Christ. I can't imagine myself or my wife if it had been our daughter; I mean of course you hang on because the prognosis for a kid who drowns is much different, but still. I know that if the family was on board, I could let my wife go as it stands--it's what she would want, and this whole experience has taught me the some of the value and nature behind making decisions for someone else vs. about someone else.

I don't know I could say the same if it was our kid, it's just a half step over some line that I can't quite identify.

Kids are always different, but it really takes a saint to raise a child who is neurologically devastated like that. Really truly does.

FAN OF NICKELBACK
Apr 9, 2002

Kommienzuspadt posted:

I am pretty familiar with stem cell therapy, and your assessment is correct.


Kids are always different, but it really takes a saint to raise a child who is neurologically devastated like that. Really truly does.

I'm a bit more conflicted in my assessment of the person, but I wouldn't challenge them or yourself on it.

Nether Postlude
Aug 17, 2009

His mind will keep
reverting to the last
biscuit on the plate.
Any update, OP? Hoping for any small detail of good news. Or any news really. I can't imagine what you must be going through.

FAN OF NICKELBACK
Apr 9, 2002
Yeah I finally gave in to lunacy, nothing is making sense.

Cognitively she's been doing better. In fact I finally got the EEG that was done a while back, and that shows we are at the tippy top of theta, versus the very bottom of it as when we started this. That means it is not out of the question that she has skimmed the lowest bounds of being cognitive from time to time.

She's definitely been more responsive to voice, and used hers just a little bit more. Extraordinarily intermittent and brief, however.

Physically her dystonia has been getting inexplicably worse, no meds seem to control it and I'm genuinely concerned.

I requested and received a CT scan. At this point I habitually get both the findings and copies of the scan itself. It's been over 50 days, so I figured a lot of the core damage would have at least made itself fairly evident. I was prepared for the worst, ready to see that W eaten out of the back of her head. What I saw instead was the brain of a 90-year-old with normal pressure hydrocephalus, to the best of my layman-ing.

I sent everything to the doctor and he'll be referring us to a neurosurgeon, because I can't conceivably put the report that I saw and the scans that I looked through together.

I mean . . . Really?

Edit: To be clear, I know it's probably just atrophy. Still though, after that report, I figure the worst that happens is we get an actual neuro to look at it and they say "Oh, I mean, no that stuff is just gone now." Who knows, regardless, maybe they'll see something that can definitively lay this out for the family (or myself) in a way that tips this whole fiasco over one side of the cliff or the other.

FAN OF NICKELBACK fucked around with this message at 18:42 on Apr 5, 2016

FAN OF NICKELBACK
Apr 9, 2002
We have our first clear and reliable movement on command, and now I wonder how long it's been there.

It took five full minutes for her to pull it off, but she raised and lowered her thumb when asked. The catch here is that she definitely has Lance Adams . . . and her arms spasm into a decerebrate posture. I mean come on. That's set up.

She kept looking to left in a jerky way and getting snapped back the other direction for the last two days, and I just assumed "welp here we go a new thing that is broken and makes her look even more vegetably." Finally I just went with it and scanned her left side and noticed that she was having oddly delayed and sluggish spasms in her left arm, like she was trying to hold it back. So I decided to check her fingers etc, and quickly realized that there wasn't any good way to check for that since everything would twist and extend rigidly away constantly.

Epiphany!

I took her hand out of it's brace, and clamped it on my arm since it was basically permanently grabbing things anyway. It worked, she would have a spasm, but her hand couldn't go anywhere, so I sorta angled my arm weird to loosen up her thumb and make sure her elbow was firmly on the bed. I asked her to raise her thumb up. It looked like it was trying for a half second and wham spasm and we're back to the start. I am so used to things that look like things, and figured I had 9 more digits to go, so why not just go with it until I was certain one way or another.

This went on for five minutes, with some very convincing half-make-its mixed in (not including when it would just pop up because her arm twisted and pulled a tendon or whatever). Finally, it just happened that her thumb started off from the "in the air" position, stuck there. I told her to lower it, and shakily it starts dropping until it is touching my arm. Then I told her to raise it again. In the shakiest, most heart-wrenching way it starts slowly climbing off my arm. One full inch up and wham a huge spasm takes us back to the start. I must have sounded like a lunatic to anyone remotely nearby.

Four times in a row we ended up repeating this painful five-min-process. Re-watched the videos to make sure I wasn't a doink, and nope--no tendons showing spasm, no other parts moving, her thumb movement was the real deal.

left the recording on and asked her to stop doing it and nothing looked anything like the thumb raise, and the spasms mostly stopped, for the next 20 min.

She pulled that off just a day inside the statistical window that still has a chance at a meaningfully good / full recovery in the long term. Assumption being that there's more under the surface that is quite simply locked away under the jerking. Also, I don't believe in miracles, but I do believe that some reporting somewhere must be plain wrong--be in the report of her being fully arrested, the 12 min CPR or whatever else it might be.

Problem is how the Hell to communicate with her. There is literally no muscle in her body that is free of spasms . . . spasms that specifically get the most intense when she is consciously trying to do something. She can't get therapy to help her use her bits without some sort of reliable communication. hahahahah poo poo. Also she's still jerking left from time to time, so I dunno what that's about. I mean it's a weird coincidence but the medical staff who have seen the video haven't really questioned it . . . it just isn't really going to help her get any therapy aside from speech at this time or anything.

I have zero doubts that speech is going to be p. useless at this point tbqh. I guess she might be able to start eating real food in a time at least.

Uxzuigal
Jan 16, 2013

Chill Berserker Dude
What an awful situation, feel for you OP. Surgery is sure as gently caress scary crap. I once had serious complications from a throat surgery so this hits close to home. I feel for you. Best of luck, to all three of you.

FAN OF NICKELBACK
Apr 9, 2002
neurorehab facility wants her, all the docs she's seen are pushing for her to be in one. just waiting on insurance review to determine if they'll cover it.

we've gotten intentional movement outta both hands, subtle but reviewed by the right people and they exist. no idea how far she can go, but the idea of a not-poor prognosis is floating around mostly due to the fact her body has been hiding her efforts and no one thinks she's been a vegetable this whole time anymore.

i dunno if she's able to come back enough to be my wife again, and no one is really able to fall on one side or the other around it. i mean . . . as my wife ok . . . it's a literal miracle if "she" comes back.

i feel good though, at least about the fact i might have kept a promise to someone really special to me. she has a better chance at a meaningful existence than she has for clinical poor prognosis, and that is really hard to take in because the woods have a lot of miles ahead before we're anywhere resembling out of them. i mean a clinical poor prognosis doesn't mean what you probably think i does, but also it still means she's likely to have a her to be that she can be alright with.

life is nonsense. here's to a successful review of her case. g'luck lady 'cause i have literally put everything i have into your you, and i found the coasters.

ziasquinn
Jan 1, 2006

Fallen Rib
Ironically makes me wish I was religious. Ironic because who could be religious in the face of such ambivalent cruelty? I hope things continue to improve, whatever that definition means anymore.

various cheeses
Jan 24, 2013

Good luck op and op wife

Uxzuigal
Jan 16, 2013

Chill Berserker Dude
Good luck ,fingers crossed and prayers.

Keep us updated on the situation if you'd like, we are rooting for you both.

FAN OF NICKELBACK
Apr 9, 2002
i appreciate that

i have no idea what i'm doing, or what's worked or what would have happened no matter what. so long as there's no chips on the table when i get up i'll get to grow old and find the ability to be ok with a mirror no matter how this turns out. is what i am saying today before i am old or care about mirrors.

Colonel Cancer
Sep 26, 2015

Tune into the fireplace channel, you absolute buffoon
Fascinating thread op, I've enjoyed reading it. Best of luck to you and your wife, for as much as that's worth.

FAN OF NICKELBACK
Apr 9, 2002
if everyone said good luck then the whole situation would be a ton more honest and bearable

no stress that is the kinda stuff that would have felt ok from the start

various cheeses
Jan 24, 2013

The healing power of GBS is fixing your wife

Nether Postlude
Aug 17, 2009

His mind will keep
reverting to the last
biscuit on the plate.

various cheeses posted:

The healing power of GBS is fixing your wife

It's what kept Caro safe all these years.

green chicken feet
Nov 5, 2015

spray-paint the vegetables
dog food stalls
with the beefcake pantyhose
Grimey Drawer

FAN OF NICKELBACK posted:

we've gotten intentional movement outta both hands, subtle but reviewed by the right people and they exist. no idea how far she can go, but the idea of a not-poor prognosis is floating around mostly due to the fact her body has been hiding her efforts and no one thinks she's been a vegetable this whole time anymore.

Amazing news. Your wife is one tough lady. I imagine how discouraging and terrifying it would be to be in her situation, with my own body working against me as I tried to make movements, just to let it be known that I was still in there somewhere. And if there weren't someone so dedicated by her side, maybe no one would have noticed her efforts. I think that would be worst of all. But she has you.

Even if she is never your wife in the same way again, you two are still quite a team. Keep us updated. You are in a lot of goons' thoughts.

Mad Hamish
Jun 15, 2008

WILL AMOUNT TO NOTHING IN LIFE.



This has been a harrowing read and I am amazed at the care and patience you've put into this awful, awful situation. I wish you the best of luck with all of this!

FAN OF NICKELBACK
Apr 9, 2002
Insurance turned us down, worried she couldn't handle 3 hours of rehab per day.

The family and I have been giving her a minimum of 4, but usually closer to 6, hours of various therapy techniques 6 days per week for the last 6 weeks.

It literally is just Keppra. Managed the neuro appt a day or so ago, and she'd just been given it, wham just unresponsive and out. Neuro proceeded to explain to me what brain damage is and how that's why she was as good as I was going to see. Which would have been an answer I guess if it weren't for the fact that what she was seeing wasn't even as good as we see.

Really wish I knew enough about chemistry and neuro bits to understand why she floats OK through the ton of drugs she's on, but this one super common drug just drags her down to rock bottom.

Anyway, so I am appealing the insurance decision, and edging the family closer to a gofundme, which y'know may or may not work anyway.

She won't survive at home or in a nursing home, no matter how great she does (or doesn't) do otherwise. Her myoclonus cause sweating and friction, the rigidity makes positioning difficult. She's already got pressure sores, and they're working their rear end off to keep her healthy, but until we get her seen and treated by a proper neuro team she's going to be in constant danger. It's just not something that "trying hard enough" will fix in our current state.

Bring her home, she won't last a couple months before infection etc. start with a fierceness. 32 year old woman with this sorta need in a nursing home? Can't see that playing out much better.

So, that's where it's at. I'm looking at dumping my 401k etc. to get a month in a neuro-rehab ($1300/day), and then hoping she stablizes enough to get the insurance companies on board. You only get like 250 lifetime days of in patient rehab through insurance, so once that's done it's done, and she's burning through them in a wonderful facility that loves her like their own, but is completely inadequate for her needs.

Her hands are starting to loosen up though, and her elbows bend easier and more often. Things, as always, continue to change.




And in the back of my mind I think about the fact that the right decision was one I chose not to make when this started, the one in line with her (our) wishes, because I figured it was no biggie. She was a veggie, and I'd systematically prove it. Family would face it and come to my side of the fence. We'd mourn together and move on and sorta just carry the pieces of ourselves close at heart, the ones that she helped us find and develop, as we all grew old and nostalgic.

Just didn't turn out quite the way I expected.

Ha, if there was anything that made our relationship, it was that we never made anything easy for each other.




If it's not too outta left field, I'll just wax on us a bit. I haven't really done that anywhere or with anyone.

She fought and beat depression, self image issues and all the other garbage tons of people deal with. She did it with me in her corner, and at the same time she didn't need me in her corner. It was like I was her backup dancer, and I never really felt that way with anyone before.

I solve problems, help people who carried too much. I had always been necessary, not useful. I liked it that way, it was safe and you can build a ton of self worth outta it on the cheap.

I think my role in her situations was mainly reminding her that she was fine and could do anything, and had been doing it pretty much forever already. She knew that, but she appreciated someone else really seeing what it was she'd been accomplishing, and often in a framework that should have made it impossible. It's sort of her thing, I guess, maybe another brain-stem reflex quirk.

Myself, I am arrogant and terribly good at it. I'm intimidated by the thought of anything that requires sustained attention (ADHD sorta comes with that). I also have a pretty innate drive to do whatever it is i'm doing better than other people, and seek out the hardest paths just to conquer them because everyone has a dumb thing they do for self-worth. She stood in my corner even if I was the one in the ring with myself, and I let her because she wanted to be my rock more than I was hers. You don't find many people who seek out that sorta place, and just because it means they'd be a part of someone's accomplishment. Not for any needy sorta reason either, just because she genuinely cared about other people. She worked hard to be that sort of impressive. She came packed with amazing character.

We came in to this relationship with a ton of baggage. Moved in together as roommates, each dealing with ridiculous situations of our own. We started reading in bed together, and nothing more than reading ever happened. We just liked reading, and we didn't like feeling alone. We felt safe enough with each other that we didn't even think about how weird that was.

We helped each other a ton, we encouraged each other to be healthier and go to the gym, we asked each other for advice with whoever we were interested in and we decorated for the holidays. We even accidentally taught each other that you can't break trust even if you make mistakes. Turns out trust isn't about one particular action or another after all, which we decided one night while talking about ex's.

Everything just sorta changed on a half-joke one day, sometime after we'd been living together for a handful of months. She had one of those nutty sort of ideas that seem just reasonable enough to toss around for a laugh.

"You know, if we got married we'd get a stellar tax return, and then we could take an island vacation with it . . . that would be awesome! And we could split health benefit costs! Wouldn't have to tell anyone!"

"Man that is an idea haha . . . but nope, no way I could marry you . . . It would be way too weird."

She just sorta paused, like she was blindsided by the fact she cared that I said anything in the first place.

" . . . Wait, why couldn't you marry me!?"

I couldn't think of a reason that didn't start and end with "Because.", so we did it. To the letter, we did that nutty thing, and it changed everything in ways I couldn't have begun to expect. Like when we still hadn't told anyone, but ended up pregnant a year later. "So mom, first off, you're going to be a grandmother . . . but don't worry it's totally not a bastard, we got married like a year ago!"

Fast forward, and we started settling into our roles, more comfortably than we'd expected. She genuinely overcame her depression, and I handled my ADHD. We were good influences on each other. We stopped feeling like black sheep. We stopped acting like black sheep.

She kept the house impossibly clean, papers organized, deadlines and dates set and met and never let anyone go without a birthday or holiday card . . . I took care of bread on the table and dealing with life's stresses for the family whenever it was an option to block it for them. We were goddamned unstoppable together. It was like being in two places at the same time, fluid and almost unnervingly synced. Everything was always handled, and handled near flawlessly. We had no family within 1500 miles, a scant handful of friends and a little girl growing up to take care of--and we were pulling it all off and life kept improving.

You just can't keep up that sorta luck, I mean who in this lovely world gets to hold on to that sorta amazing everything?

Our kid is rad, by the way. I'll never forget the first time she told us that we should all hug together because we looked tired and hugs can fix anything. She never fails to pull a ton of compliments, just like her mom. Haha wherever I take her she's always the most polite, smartest or most beautiful kid someone decides they've seen.

Anyway, weird thing, two people who were used to being the strong structural support in relationships, begrudgingly acknowledging someone was better at it in some situations than they were. Once we got over ourselves, it just worked.

Not needing each other let us fight, think about divorce and all the other junk that happens in a marriage . . . but it let us do it while being forced to realize we were choosing not to go anywhere. We were free to be, well, honest. Sort of forced to be, really. We could only answer the question "Why am I here, and why am I dealing with this garbage" so many times before honesty leaks out. Usually it was "Oh wait, some of that is my garbage. Aha. Never-mind me, I'll be right back after I take care of this first."

It got to the point that in our worst moments it went a lot like: "What's your goal? Is it just to make me feel bad, or is it really that you want a different outcome? If it really is to change my mind, or make me do something differently, then do you really feel this is getting you closer to that goal? It just sorta feels like you're upset and looking to walk away feeling superior, and it's annoying. If I'm wrong, I apologize, and I'll let you try saying it again."

I know it sounds weird, and I guess it is, but it was just . . . we found this ridiculously honest and respectful place together. We'd ask if we were really doing the things that made us happy, or if we were latching power or superiority like a bad drug that would shove away tough realities. Asking ourselves, and each other, "have I ever truly picked that apart . . . am I wrong about this core belief because I've just let it . . . exist? Jesus christ. What if I am!?"

We redefined best friends for ourselves and each other. Everything slid into this impossibly deep relationship; loving--truly loving, frank and with a partnered resolve and appreciation I never imagined I'd be a part of. We really cared about each other. We didn't set out to have this sort of relationship, it just fit. We just fit. From day one as roommates, we were the best couple we didn't see coming.

We never forgot to tell each other we were grateful, to thank our partner out loud for making us a better person. Every day, no lie, we'd find a reason to say it in those words to each other. Too easy to forget that you don't just wake up in a vacuum being the person you are, and you don't break bad habits without encouragement. Way too easy to forget that love is work, and that the work has to be handled by someone who looks out for you better than you do. So, we'd always appreciate each other pretty matter of factly.

No one gets that in life, not the real deal, ever. We knew how lucky we were, out loud and every day.

I get sad, beyond sad, almost cripplingly empty when I think about the fact that I probably won't ever have that again. You don't luck into love, you spend years nurturing it out of and into each other and yourself. It takes a ton of luck for two people to be in the place you gotta be in to even make that a possibility, much less simultaneously and in the same physical location. Developing a place where apologies aren't dangerous, where trust is almost a nonsense word and where no one lets you fall so far that you need to get picked back up isn't easy in the best of circumstances.

I miss that so much. Having someone who holds your hand, and not for their comfort, or even yours. Just because it doesn't have anything more important to do, really.

It's hard to think that all of it is, in all likelihood, firmly relegated to existing only in memory. At the same time I got to live in a near-fantasy relationship for much longer than most people ever get to enjoy. It's hard not to get a sense of fortune and respect for the luck I've had. If she can't come back, I hope she doesn't remember any of it. I can't imagine anything more cruel.

Man, this blows.

FAN OF NICKELBACK fucked around with this message at 21:39 on Apr 23, 2016

Dr Cheeto
Mar 2, 2013
Wretched Harp
This is extremely hosed up. I'm sorry, OP.

root of all eval
Dec 28, 2002

FAN OF NICKELBACK posted:

If it's not too outta left field, I'll just wax on us a bit. I haven't really done that anywhere or with anyone.

Good read, thanks for sharing :) I have a similar relationship with my wife. I think you'll find that it's not fate or chance that made it work, as much as it was two best friends getting over themselves in favor of common goals. In X or Y years if you are ready to try again, don't think it isn't possible. If anything move forward knowing what love can be.

You sound like an awesome dude and I see so much of myself in how you are dealing with it hurts. As long as you keep posting about I'll keep reading appreciatively and sending positive vibes for whatever that is worth.

FAN OF NICKELBACK
Apr 9, 2002
Either way, I've met a lot of couples young and old and never saw one that left me thinking "I can relate to that, it's just like the one I have."

On the other hand I'm probably not in the best of places to look at any of this objectively, in any context.

I'm a terrible dad currently. No room for much of anyone no matter how important they are. Work is suffering because of the all the things I have to deal with that pull me away from it. And before it comes up again, even if I took up a therapist--which I don't think I need but doubt would hurt--where would that hour a week come from?

I wake up, eat, work, go to the hospital, deal with paperwork and calls and phone tag, deliver a couple hours of therapy, get home in time for my daughter's bed/bath (but usually end up having to look something up or finish some medical-whatever process while someone else takes care of the routine household stuff).

Then I sleep and repeat. Weekend comes and I'm beat, emotionally and physically.

It's why I need her in the proper place, because until then, there's just no one who can adequately handle the situation for me. It's almost annoyingly tenuous and demanding, and I honestly do not want to deal with it anymore. I mean, who would honestly?

But, mentally I'm drifting back to a better place. Even if it's a stressful and demanding routine, it's still a routine, and I'm slowly finding a groove. I feel me, the one that used to exist day-to-day, surfacing more often. I really wasn't built for this poo poo is all I'm saying here.

Norton
Feb 18, 2006

i am sorry op. i cried reading your posts

i hope you are able to stabilize and enjoy the rest of your life with your daughter

ziasquinn
Jan 1, 2006

Fallen Rib

Norton posted:

i am sorry op. i cried reading your posts

i hope you are able to stabilize and enjoy the rest of your life with your daughter

Yeah, holy crap op. When you first posted this, I was running everything you just posted in the background, because I felt that. That sensation of luck and intimacy and wholeness oozed from your first couple posts. To see you wax on it and confirm that deep well of love is... emotional.

I'm so sorry too. I hope the appeal goes through. I hope you can always feel you did __everything__ possible

FAN OF NICKELBACK
Apr 9, 2002
The one thing I get that almost no one gets is no regrets.

Sort of a cold, but goddamned welcome, consolation prize.

Think I said it earlier but even the night before this happened was more then most get when something like this happens. Holding hands, forgiving each other for everything around the situation, and talking through tears about how glad we were that the surgery went okay 'cause we never loved this and were grateful for each other . . .

I cannot imagine surviving this after having a fight the night before.

rabble rabble
Mar 24, 2015



Nap Ghost
Just read the entire thread through--I am incredibly sorry that the gods of chance totally hosed you on this one at the outset. Know that at the very least you've motivated me to get my similarly young wife and mine legal documents in order. Sounds like you're doing exactly what I'd be doing, and the best job possible in the given situation. I wish you and your wife the best of luck.

FAN OF NICKELBACK
Apr 9, 2002
Keppra finally, completely, removed. Much, much stiffer when left to her own devices, but when I ask her to relax I can position them pretty easily with a bit of patience. Leg still bugs me a ton though. Also, virtually no spasms / myoclonus, which is pretty counter intuitive I suppose. Don't know if that will change, or if it's part of the overall changes we've seen (such as her hands rarely, if ever, curled up like in palsy over the last few days).

Came in early this morning and she was wide awake and pretty responsive; kept looking to the right and would . . . get frustrated? . . . when I tried to get her to turn her head to the left for some of the exercises we do.

Quickly realized it might mean the same thing it did last time, and I noticed the blanked wobbling a bit on that side. Pulled off the blanked and her foot was moving in tiny circles, and no associated spasm I could see. I asked her to open her mouth if that was her making her foot move; she did it without skipping a beat.

I have a bag of piracetam on the way, since unlike in the UK it's not FDA approved here as either a supplement or a treatment. I plan on using it as a decorative sand art substrate.

I'm pretty sure that Keppra (levetiracetam -- a piracetam analogue) is causing the shut down due to the way it may disrupt communications between the left and right halves of the brain in individuals who don't actually have epilepsy.

And a few minutes ago insurance denied the appeal for reasons beyond me, and neuro rehab withdrew the offer to allow us to pay up front for a month (at ~$1300 daily) because they don't feel they'll make any real gains in a month at their facility.

I'm really getting a better understanding of the reasons behind all of the anoxic case studies ending with "poor prognosis." I mean look, it's not like you are more likely to have a good outcome than a bad one, not from anything I can tell in the research or anywhere else . . . but you could not more clearly guarantee poor outcomes where there may not have been than by literally denying service to injured people.
  • 70.2% of deaths from traumatic brain injury (the "good kind") related to withdrawal of life-sustaining therapies average.
  • 45.6% occurred within the first three days of care, 64% of deaths within three days of ICU admission.
I was gonna put her in that 70.2% (and both the other percent's), based on the opinion of pulmonary doctors who simply read from the report of an MRI scan they wouldn't understand, that was written by someone who had "consulted with neurology" and ultimately . . . this hasn't really at all played out like any of them had suggested. I was definitely not supposed to start seeing these kinds of improvements within a couple months. I also can't help but get really pissed when I wonder what role Keppra had been playing in everything from EEG readings to delays in improvement.

I still question whether or not it was the wrong decision at times--but the more I read, experience and learn, the less I feel like I made a mistake. At least, the less I feel like I definitely am doing something against our joint wishes . . . Point has always been that we would pull the plug if one of us was going to be nothing but a burden the rest of our existences. At the core of it, anyway, but if there was a reasonable chance that we'd come back mostly, just a little different than before in the end, we'd plow ahead and support each other.

Doctors were right, still, in "how far does she go and would she be happy with the life she has?"

The answer is, pretty goddamned simple. That's irrelevant now. I get it, but it's too late. No one gets to worry about that because she's a cognitive being, at whatever capacity, and there's no rules about how much further she can go--and no way for her to let us know how she feels now that things didn't turn out like she'd asked. Christ, 72% of locked in syndrome sufferers said they were happy. Only 4 out of 59 said they would choose euthanasia. I can't really understand that for myself, but they probably couldn't prior to experiencing it either.

If someone shows any potential for consciousness, they should be allowed (should the family decide not to withdraw life support) full access to rehabilitation resources for a reasonable period of time. In my head I guess that's sorta how I figured it worked before I experienced the system at work.

See, before all this I was hard on the other side of the line.

It's not my great love for her suffering that changed that, it's the fact that holy poo poo are people set up to fail with brain injury. How the hell can the studies even be relevant in a stalled, backwards and begrudging environment? Why are we putting more effort into explaining why people should pull the plug than into how we help them if they don't?

My gut tells me this should have been pretty simple. "OK, fine, you think they're gonna be OK with coming out the other end with a disability, or maybe just staying like this? Look we'll put her in an appropriate neurological rehabilitation program staffed with people trained on the various degrees of consciousness then after 8-10 weeks no matter how they do, if we don't have any improvement, you have a vegetable and need to make arrangements to take them home or bid them farewell. Otherwise, after the 8-10 weeks, we'll keep helping until they don't need it or don't show improvement for a couple of weeks."

Beyond that here's some study around it: almost everyone (who was clearly going to be kept alive anyway, since they already were) improves in neurological rehabilitation settings. If nothing else, it makes them less of a financial / societal "drain" for everyone.

Cases with no impairment of consciousness increased from 16 (17.2%) on admission to 34 (36.6%) at discharge. That's goddamned significant for anoxic/hypoxic brain injury.

The only area that didn't show as much improvement was in traditionally comatose individuals, only 18% improved.

Overall 52% did not get discharged to a nursing home and did not die.

Here's more study: Nearly half the patients followed at least 1 year achieved recovery to, at least, daytime independence at home and 22% returned to work or school, 17% at or near pre-injury levels. Discharge FIM score or duration of MCS, along with age, were best predictors of DRS in outcome models. DRS scores continued to improve after 2 and 3 years post-injury.

And hey more study: For both patient groups (minimally conscious and wakeful unawareness) significant advances could be achieved during rehabilitation, even if patients received treatment after many months. For example, a MCS patient (Table S1, patient 5) who was admitted to the rehabilitation center 4.5 years after hypoxia with a KRS score of 14 improved to a KRS score of 24 as therapists were able to establish a communication channel. Although she remained completely dependent in everyday life, she became able to communicate her needs and feelings.

MCS etiology did not affect prognosis at all. The distributions were similar for traumatic and hypoxic origin (P = 1.00; sensitivity = 0.46; specificity = 0.50; Likelihood-ratio = 0.92) and also taking other etiologies into account (÷2(2) = 0.84, P = 0.66). Thus, all etiologies had similar chances to improve from MCS.

In MCS patients the difference between assessments was highly significant (Fr(2) = 42, P < 0.0001). Significant differences between admission and discharge (difference-in-rank-sum = −38.0, P < 0.001), as well as between admission and follow-up (difference-in-rank-sum = −46.0, P < 0.001) were also present, but there was, on average, no significant change between discharge and follow-up (difference-in-rank-sum = −8.0, P > 0.05).

(KRS is the german coma recovery scale)

Figure 1

Just to be clear, if they average a 20/30, then first you have to recognize that a reasonable number made it higher than that. A 20 could easily be deaf and reduced tactile sensations with everything else being OK, or being left mute for whatever reasons (like my wife) and have some spasticity. Or you might recover more later. Or, who cares because you're here now, and thanks to rehabilitation you likely aren't a burden (financial or otherwise) and you were gonna keep being here since they took you this far anyway.

I think it might not be what either of us really wanted, and I hope no one has a nutty situation that prevents me from getting my decision granted if I have a similar injury . . . but by the end of it who knows how I'll feel. She might come back to a pretty OK place that lets us rework our relationship, but continue it. She might not go much further. I can't help but hurt a bit feeling like I might not ever get to squash the doubt that she could have had more because the rehabilitation she needs simply isn't being made available to her.

The more I learn about this stuff, the more depressing our inability to get it appropriately addressed becomes.

This is the single most nonsense thing. Just, entirely that, wowee.







EDIT:
just to be clear, i'm not implying she'd come back at the high end of functional. i mean of course i'd like that, but i wouldn't go so far as to say i expect it by any stretch. but yeah, absolutely, she can/will improve to varying degrees.

in general, no matter how badly damaged, people generally improve when they receive appropriate rehabilitation.

the only thing 100% guaranteed is that she is definitely not receiving the only things that might actually improve her situation (for her and her family/caretakers). . . regardless how marginal gains may or may not be . . . because brains are only magical things that can miraculously heal as long as you ignore them entirely.

earlier in this thread i argued against CPR in certain situations--EMT says nope, we always try because they're not dead until they're warm and dead.

the results blow and i say she should get some rehabilitation at a proper facility since there's a greater chance that she'll improve than there was that she would survive CPR at all--insurance says nope, we only try if we personally think they're going to improve. neurorehab says nope, because the chances are only barely greater than her surviving CPR that she'll improve enough in a single month to convince insurance to pick up the rest of the time she'll need.

well gently caress

FAN OF NICKELBACK fucked around with this message at 20:37 on Apr 25, 2016

various cheeses
Jan 24, 2013

gently caress insurance companies

ziasquinn
Jan 1, 2006

Fallen Rib

various cheeses posted:

gently caress insurance companies

Seriously.

The Neuro rehab place completely backed out? Even if you could pay for it up front? What the gently caress?

Didn't you mention something about gofundme?

Ugh it's so frustrating that any progress you're seeing is being written off or ignored because the wrong kind of doctors or specialists are misunderstanding or tunnel visioned

FAN OF NICKELBACK
Apr 9, 2002
It's not even being written off or ignored, that is the twist of the knife.

It's just not the box that needs ticking. She simply has to reliably communicate/participate in all therapy sessions. Honestly, I'm just looking for someone who can therapy at her, there's all kinds of things you can do that can help.

She can't, even if she's 100% conscious as of now. Her body doesn't let her have consistent control of anything. It's brutal to watch her snap into full body myoclonic spasm every time I ask her to try something. For hours it can go on before she weakly accomplishes whatever it was we were trying to do.

Hence the intermittent, and I am seriously convinced if that can be conquered then we'd see a severely disabled brain injury that would qualify for therapy that would result in improvements. Unfortunately, that is the catch 22 to getting her appropriate neuro rehab. Her neurological issues.

FAN OF NICKELBACK fucked around with this message at 21:43 on Apr 26, 2016

Edgar Allan Pwned
Apr 4, 2011

Quoth the Raven "I love the power glove. It's so bad..."
Just went through the whole thread. Blown away by your tragedy and going through it. I cant say much beyond anything that anyone else has said, but.. Try and spend some more time with your kid. For a variety of reasons. Has she seen her mother at all, or do you think that wouldn't be good for a kid to see?

green chicken feet
Nov 5, 2015

spray-paint the vegetables
dog food stalls
with the beefcake pantyhose
Grimey Drawer
Have you considered maybe going to the media with this...? I know it probably is the last thing you would want right now, being in the public spotlight. But you do have such a compelling story. It has the potential to draw attention to your wife's case to enable you to pay for better therapy with the gofundme. Or what if you could catch the attention of someone with the power to influence a hospital or such on your wife's behalf.

FAN OF NICKELBACK
Apr 9, 2002
It's not like you imagine. There's no room for anyone isn't an emotional statement. literally I am a terrible employee, father, brother, son, friend and any other interpersonal relationship you can imagine because there's no room.

Wake, eat if I remember, work as best I can while thinking about my wife hating her life (a positive because she's self aware, you see), go see my wife because as the speech therapist says I'm "so good with her" she "never gets reactions like this" and then double down because my wife is on a timetable that is ever ticking, go home and eat if someone else thought to get things, lay my daughter down and read her a book if someone else doesn't have to for me because I'm doing paperwork or researching a thing.

Sometimes you actually don't have time, which I feel bad for thinking things about people for experiencing.

I don't lie to my kid, and it's worse because she doesn't want to see her mom usually and I can't fault her. I didn't want this, partially for that reason, but it's a reality so I try to encourage her but won't force her because what a gross thing to do.

Media and gofundme are things, but like real life, aren't magic. They're maybe. You have to weigh that because who wants to exploit the person they love in a way they don't want to be remembered . . . And who wants to shove it at a private family.

Sure it's the best option, but that doesn't mean it isn't the single shittiest thing to handle as being real life. It should not be how things are. It just should not.

FAN OF NICKELBACK fucked around with this message at 05:56 on Apr 26, 2016

FAN OF NICKELBACK
Apr 9, 2002
haha ok this is going to something

there's a huge gap in the medical industry for minimally conscious patients, and i sorta have to shrug about it because ok great well that's true. you gotta participate / communicate reliably in order to get your brain helped. i can't change that stupid idea so i have to bridge my wife's gap or give up on things that seem true to me. my literal job is problem solving and not saying things like "ok here's why we can't make this work" so i guess i should be ok at doing things for family that i already do for money.

hahah this is even worse than when i puffed air in her eye but y'know there are three things that are 100% true in life

1) if a person you think is a stupid rear end in a top hat can learn to do something that other people also do for a living, then anyone bored enough to practice enough can do it too

2) the last neurologist was a stupid rear end in a top hat

3) we're all stupid assholes and can pretty much figure most things out by reading (and trial and error) and having a practiced lack of concern about how wrong or disappointed we are at any given moment

i get doctor's/nurse's support for "hey she has a chance and isn't a vegetable, she just isn't ready for rehab yet." and that's useless to her situation so i guess i have to do dumb things now. ha i said "now".

i mean, against the expectations i had when i decided to figure out how to do dumb things, there's:
and ok if you are a nerd and wanna toss out "ok but that's dumb you'll at best get electromyography, not encephalography" well who cares because i got nothing but time to dick with things anyway and also it doesn't really matter how she makes a cursor go a direction so, w/e. i figure she's gonna get an out-of-pocket skilled nursing facility for a month once insurance gives up on her (probably this week) anyway, and i can probably do all kinds of annoying things to her in a month.

i draw the line for being off the deep end where magic and mystery and eating tons of vitamins live. i'm persistent, not a lunatic. besides, she's always lived with my nonsense doings, so at the worst she'd appreciate the normalcy.

i feel like i am using her as an excuse to do this and also that she would call me out on that.

extra stout
Feb 24, 2005

ISILDUR's ERR
still feeling badly for you, and im curious of a few things if you don't mind. are there really studies involving nootropics helping someone in her condition or are you basically just trying things because they aren't on the list of things you've tried now?

this one is not at all going in a creepy direction but feel free to ignore it if it bothers you: do you currently feel like your wife is just in an injured state of her former self, or are you trying to revive the person who was your wife into someone who will essentially be a similar but limited and different version of your wife? do you still kiss her or do you feel uncomfortable around her, it seems like from her complications she could have some very limited understanding of who you are?

are you planning on just going day by day with the research and finances until you're out of options and broke, or are you still considering using that 6 month timeline data you posted several pages ago as some kind of a rule about when you have to let go of your wife and then focus on your daughter with the time and energy you currently devote to your wife?

last time i posted i told everyone else to shut the gently caress up with their rational and sad posts, but i guess the longer i see this thread up the more i want some kind of positive outcome for you and your daughter because it sounds like it might be even more sad than originally displayed, and the person receiving all of this energy/time/devotion/resources has no idea about it, also i am an idiot who knows nothing, good luck

FAN OF NICKELBACK
Apr 9, 2002
http://www.ncbi.nlm.nih.gov/pubmed/10338109

http://jnnp.bmj.com/content/64/3/344.full.pdf

http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2005.04105.x/pdf

etc etc etc

levetiracetam sucked for her and i can't get a doctor to prescribe brivaracetam even though it was just approved by the FDA this year.

also i have no idea about anything other than the fact i trust my inability to want good things to happen when faced up against testing to see if good things are happening. if i ask her to lower her thumb and she does it, it doesn't count unless she raises it back up without jerking, and only if i ask her to. it takes hours, but there are real things that have occurred.

she is in a really lovely situation and probably hates me for asking more after i just asked a thing, but that's the only reason doctors have listened to me--and by proxy decided she might actually exist in there.

as far as if i think she's in there . . . i mean i dunno man that's a lot to ask of a person that lost a ton of the organ they use to be themselves.

i think that there's enough possibility that i'd feel like a monster pulling a plug, i guess, is the only answer. i really am not trying to save "my wife" at this point, but i am trying to save someone who would otherwise be hosed by the system that i used to believe was honestly just trying to help families not be insane.

the strangest thing is that i guess i feel like i'm saving someone my wife would care about, someone related to her that she put a lot of effort in or something. i dunno, it's weird, all of it. in case she totally comes back someday eventually and for some reason decides to know somethingawful exists and also my username, JUST KIDDING HONEY GLAD YOU'RE BACK


edit:

also the whole of your post is pretty solid. the funny thing about effort is that you have to have drive behind it. it was a pretty early on post that i said essentially that you have to find a way to give it everything or you won't. i'm not delusional, maybe stupid in hindsight later at best. i don't need saving, but i sorta have to respect myself and feel like i lived my part of the bargain when this is over--because it'll be over one way or another eventually and i prolly won't be.

edit:
i mean i will be over at some point but i think we're all on the same page here

FAN OF NICKELBACK fucked around with this message at 19:20 on Apr 29, 2016

Rodnik
Dec 20, 2003
Please spend more time with your daughter. She has lost her mother, reading through this thread it sounds like she has lost her father too.

I know that sounds mean and I suck but God drat dude.

Rodnik fucked around with this message at 20:38 on Apr 29, 2016

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FAN OF NICKELBACK
Apr 9, 2002
yeah i mean it's going to happen and i'm not oblivious to it or in any way feeling like i'm taking the absolute right path

sometimes things just genuinely suck and we wade through it and come out the other side

she has family picking up slack, and in a few months (barring an actual miracle like a neurorehab handling my wife so i can stop playing like i am qualified to do things) things will have a new normal no matter what

kid will be 16 one day, not remember any of this, and have a lotta questions and a lotta thinking about things. i'd like her to, at worst, have a lotta years of undistracted dad time and a lack of "why didn't you" to fuzzy her thoughts or mine.

it's impossible to explain until you're in the swirl of it, but it's complex. you have two sides of a lady's family with opinions, doctors that conflict and studies that are pretty straightforward bad except for the ones that aren't and that you can't get the items to replicate . . . all while the end result of time is that once insurance decides it's not worth handling then it ends up in front of your daughter every day. i'd imagine her and i will find a lotta reasons to hit the park on the daily around then.

FAN OF NICKELBACK fucked around with this message at 21:53 on Apr 29, 2016

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