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thanks to things like family and the rest of life, i can only really vent publicly on message boards no one reads just kidding mods. it's like screaming into a cavern i guess, but for nerds? i promised a lot of family i'd keep things private, but also i am always on the verge of exploding. i hope this works as an in-between and also that it doesn't bite me in the rear end somehow. my wife of a number of years recently had a surgery to fix a boring thing and was sent home. she had a complication the day after release, passed out from blood loss on the way to the hospital (5ish min from the er, someone else drove her) and then underwent 12 min of cpr and 2 units of blood. when the hospital called me they said "we're trying to stabilize her heart" instead of "we are trying to get a heartbeat" even though she was completely asystole. it was super. i got a ride (she had the car) and did crazy husband math on the way from work. "ok so it was six minutes until she passed out, she's healthy as heck and she totally had another 2 minutes at least before she ran out of blood. well ok great then they definitely got a bunch of oxygenated new blood into her brain using cpr before it was too late, so it's definitely all good!" so that is an imaginary idea and also what they do not tell you is that cpr is the worst thing to be on the winning side of. also she had to undergo immediate surgery, so no hypothermia, and no whatever chemicals prevent the doubly awful damage that starts when a system is back up and running. here is a thing that is suddenly acutely meaningful to me, as an example http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3074242/ i made it to the trauma room to see her bucking over the vent and covered in blood, had to sign papers, and took her hand and whispered it would all be fine and that i loved her. pretty sure she squeezed a little back, but y'know, it's kinda inconsequential overall. now she's in her early 30's, and as of the hour after surgery, in a vegetative state. i guess it's been for roughly the last week and a half. no real eye movement, just posturing and seizing in response to almost anything. of course also she needs another surgery to repair the thing she had repaired twice now in two weeks on top of it. i get sad and angry and laugh like a weirdo because i can't find things like the coasters to put my coffee on. also i can't sleep in our bed. trying to reset passwords and log into all her credit cards etc. to pay bills is strangely traumatic too. we have a lil girl who starts kindergarten this coming year, and she doesn't seem to care about it. i mean i'm glad, but also holy cow when she says she misses her mom and cries and then i start consoling her and she asks if she can have candy and doesn't actually care. definitely some family therapy in the near future i guess? i don't think there's much chance i'll see my wife as my wife again, the mri results look grim, and of course we didn't have wills so i can't just follow through with wishes i knew she had (tell a family "no really she didn't want saving if it was this bad!" and see if you strain a relationship your daughter depends on or not. also the burning "what if i'm wrong though and she's just about to pop right up" that hits every time you try to give in to mourning so you can get it together eventually). holy cow was she wrong when she was like "if anything ever happened to me, you'll be fine!" i also feel weird using past tense talking about her but there's pretty awful terms in her mri report like "diffusion restriction in the splenium of the corpus collosum and the centrum semiovale." it's hard to be hopeful and it makes me feel pretty terrible that i'm not at all hopeful. so, i mean, i dunno how to end this post really. i guess that's the story of my worst valentine's day ever! FAN OF NICKELBACK fucked around with this message at 07:13 on Aug 4, 2016 |
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Feb 22, 2016 01:30
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yeah. i literally told her not to worry about a thing that ended up starting this mess.
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Feb 22, 2016 01:34
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i mean i dunno what i wanted outside of just to let it out it's a lot, and no joke she just got a new job not that long ago and we were stoked about moving to the nice part of town, lease is up in a month and the new place is gonna make things tight. the night before it happened she was all kinda worried about the scar from the initial surgery and not feeling pretty (it was literally no big deal). i told her it was fine and i was sorry i wrote off the thing that caused it all. she forgave me and took my hand and cried a little and said that she'd never loved me as much as she did when i sat in the hospital with her every night and that she didn't care about anything else. literally wish i could fakepost this good and that i wasn't trying to find a way to feel something that didn't make me cry or pace a lot
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Feb 22, 2016 01:42
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just go write wills ok, even if you're in your 20's or whatever
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Feb 22, 2016 01:45
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Lord Binky posted:Haha jokes on you, I have nothing and nobody loves me or wants my garbage anyways 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
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Feb 22, 2016 01:51
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Jeff Sichoe posted:Put her hand on your willy and see if you catch her smiling you are literally more tragic than my current situation
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Feb 22, 2016 02:13
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Bipolar Transistor posted:Common sense. She was out of her coma and into myclonic seizures (when they tested ceasing the anesthetic) and an otherwise vegetative state within a couple hours. I had no idea how much I was supposed to care about "bilaterally dilated pupils" until the doc looked up and sorta apologized "this is . . . significant brain damage. Significant." I absently tried to argue him into taking it back somehow. I know loss, grief and change are pretty shameful things, but clearly poo poo happens so gently caress common sense I guess
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Feb 22, 2016 05:29
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les fleurs du mall posted:What does the thread title mean OP? Hey beautiful, I noticed that you're ischemic I couldn't think of a way to make it work or funny so I just left it and typed other stuff instead
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Feb 22, 2016 05:33
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The worst part, and I'm going to go wrestle sleep after this, is when you realize you have always been wrong about what brain damage really is. See, it's not "oh they are dumber now and I guess I'll wipe their rear end" it's more like "oh, this bit makes them paranoid, and this over here makes recognizing voices and words not work. Over here they go blind, and this part is basically ms. This last bit just makes them too functionally apathetic to even move." So basically sometimes they are cute and dumb and other times they are trapped in a confusing and unimaginable hell with no hope of escape. Also maybe if you really give it your all you can get them to a level of function that removes any plug you'd be able to pull anyway, but just that level.
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Feb 22, 2016 06:29
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I spent 5 full days with four hours of broken sleep each night reading case studies. I figured there had to be one instance that could trigger hope for a return to normalcy. There's nothing mean about what you're saying. No offense taken. No joke, I've been drafting my will and you bet your rear end there's a provision for refusing out of hospital cardiac arrest resuscitation. Fuuuuuuuuuuuck that forever
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Feb 22, 2016 06:48
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Sorry, I can't go into details around the illness or surgery. I know how irritating that is, but nope. Maybe someday when the fan is cleaned off? Also, this was an ok place to toss it up I guess. There's only so many offers of help and apologies you can deal with before you are kinda sick of pity. Btw, I have learned that "if there's anything I can do" and "let me know how I can help" are inadvertently very lazy and terrible offers. I feel bad about using them in the past now. As a tip, if you know someone has a lot going on, don't burden them with the further burden of figuring out your role in their grief. Just think of a specific thing that would help and offer that instead. "Hey, tell you what, mary will watch your lil one on Friday and I'm taking you out for a drink so you can unload" for example or "I gotta drop my dry cleaning off this week, let me do you a solid and take yours with me" or whatever.
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Feb 22, 2016 13:03
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sout posted:I have no idea what to say other than to wish you and yours well, you shouldn't have to be dealing with this. I mean good looking out and all, but I really can't sufficiently underscore how completely useless, uncomfortable and unnatural being inundated with pity and empathy is on the reg, and finding it here would feel twice as foreign. Also I mean . . . I dunno if really I'd look for or take advice or anything unless some neurologist happened to be reading and was like "hey try this reasonable thing! it might actually miracle something, check out this study!" Overall, it's not exactly a thing that has a whole ton of available perspectived experience or clear paths back to every day life, y'know. I think I would actually feel worse if someone in even a slightly less shittier situation actually logged into Something Awful looking for a return on emotional investment. I mean, drat. That would be wounding to observe. I guess questions are cool though, it feels good to just lay things out and think things through in ways i might not have, but I still can't go into a lot of identifying sorta info or details for reasons.
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Feb 22, 2016 15:54
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oh also here's a thing in case anyone wants to see how bad anoxic eschemia actually is, and what it looks like to beat the odds and come back after 10+ minutes of CPR after your heart sits around without a job to do. consider this a psa that i am kinda upset never appeared on tv when i was a kid. if anyone feels as though i am overestimating the damage, feel free to play devil's advocate, i ain't gonna be mad at you [summarized transcript] code:FAN OF NICKELBACK fucked around with this message at 16:13 on Feb 22, 2016 |
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Feb 22, 2016 16:10
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VelociBacon posted:OP I'm one of the people that deals with all the ICU and ventilator stuff your wife is going through. Super sorry to hear about this but wanted to say I wish all families/spouses were as reasonable as you seem to be. Have you got in touch with social working at the ICU? They can at the least put you in touch with some resources that might make this all a bit easier. I'll only take issue with the fact that it's the "right" decision. She passed out from blood loss 5-7 minutes away from the hospital, ~6 minutes after her bleeding began. Think about that math for a moment, as well as that she was, confirmed, asystole on arrival. Regardless of age, it becomes a very trepidatious argument to assert that pushing through 12 minutes of CPR is the "right" thing to do. (www.ncbi.nlm.nih.gov) posted:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3074242/ 10,000 people have an OOH arrest. 500 do not stay dead. 25 go back to work and have neat water-cooler conversation. of the remaining 475 . . . Approximately 40% enter a persistent vegetative state. So thats . . . 190 situations that are emotionally and financially devastating to an entire family for an untold and ongoing number of years. That leaves us with 285 not-dead people (hooray you did it!) Mild to moderate deficits are seen in 34% (96) and severe cognitive deficits in 17% (45) the remaining 144 have some memory issues and go home eventually. So, and I'm sure there's contradictory studies and forgot to link them all as I went, I'm going to have to say that it's even mathematically hard to pronounce it the right thing to do. There's a greater chance that you're financially straining entire families for indefinite amounts of time, keeping them emotionally hostage to a hospital's visiting hours, than actually saving anyone. Sure, hypothermia and other techniques can increase the ratio--but there are some clear situations (hypothermia not possible, timeframes not met etc etc) in which it's almost irresponsible to set it firmly as a matter of standard policy. If my math is off, whoops. Still though, it's not going to be that far off.
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Feb 22, 2016 19:05
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They're good people. I'm not somehow under their control even if I seem resentful or irritated. I'm just respecting their process, and resentful and angry about everything. She was my best friend, and the partnerships behind and around that just made the world look a little different than it did before or does now.
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Feb 22, 2016 20:23
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Again, context matters. If you cannot do hypothermic treatment, the patient has lost a significant enough amount of blood to stop their heart and you know the brain has likely been out of oxygen for minimum of three minutes . . . then maybe you shouldn't go all the way to 12 minutes with your CPR. In that and similar cases it's almost irresponsible as an implemented standard policy. You, at that point, are much more likely to be creating an awful situation for everyone involved then truly save even one person in the context of anything resembling who they were before your efforts. Driver's licenses should basically have two numbers in the lower right corner, the first being the number of minutes without oxygen that you're willing to accept resuscitation efforts (if known), and the second being how many minutes of CPR you're willing to acccept if the first number isn't known or has been maxed.
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Feb 22, 2016 20:57
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Magellanicice9 posted:Chiming in as a neurology resident that has dealt with more than a few cases of anoxic brain injury related to cardiac arrest. You will have to forgive me if I am inelegant as I have just finished a week of nights. She never entered a coma, just straight into "wakeful unawareness" once they took the propofol off after seizing ceased in just over 24 hours. her pupils ceased being bilaterally dilated however and, though they don't move meaningfully or much at all really, they do respond to light. She does the basic things like chews on her intubation, yawns/gags/pain reflexes to an extent, and that's just about it really. lotta decorticate posturing. The first MRI on day three only diagnosed her with Posterior Reversable Encephalopathy Syndrome, though that seems to be subsiding for the most part with no other visible changes noted. The actual MRI results from the second MRI were posted a bit earlier up as well. Go hog wild. Her eyes open, she seizes as a default response to basically anything, and the only thing that even seemed like it might have been a good sign was three or four days ago when she slowly lifted her arm up with her hand/wrist limp and moved it slowly away from her body towards family. Pretty sure that was just "a thing that occured" however in hindsight.
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Feb 22, 2016 23:38
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i dunno i'm still in a pretty weird place so i'm searching out and jotting down novel testing because the worst that happens is it's going to help align everyone to her original wishes to cease support and let her go which i guess is tied with the worst that happens which is it completely demolishes all the discussions i've had and forces her to stay like that a bit longer code:
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Feb 23, 2016 04:14
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ok my last idea was terrible and i had a lot of bad days but i am reopening this because there's a thing i found that actually seems to work to a degree. i mean in theory because she doesn't have it yet. i hope anyway, but look i am sharing this because what if and junk so why not. the doctors are like "sure ok this isn't crazy, i guess we'll see" and the guy doing it is like "yeah i've seen it work twice so let's give it a shot. anyway so i guess hope this helps if you have a lovely and applicable situation laying around? https://www.researchgate.net/publication/6441867_An_unexpected_recovery_from_permanent_vegetative_state http://www.hindawi.com/journals/crid/2013/129234/ http://link.springer.com/article/10.1007/s11916-014-0466-8 http://www.ncbi.nlm.nih.gov/pubmed/25416459 http://clinmedjournals.org/articles/ijbdt/international-journal-of-brain-disorders-and-treatment-ijbdt-1-003.pdf http://258c188952b70d6e4685-bab8b91...port%20(28).pdf btw seriously having doctors trust an idea you find yourself about doing a surgery/treatment on your wife is pretty stellar and also pretty scary for a ton of reasons FAN OF NICKELBACK fucked around with this message at 07:22 on Mar 1, 2016 |
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Mar 1, 2016 06:55
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I have to try basically everything before we run out of statistically relevant time. I know I owe her a standard of living or a kept promise. See, I am a short skinny nerd idiot and she is (can't use past tense or I might not try as hard as I need to for every percent of chance in her favor . . . Much harder emotional falls, but I have to guarantee no chips were left on the table when I look back on this) a legit genius and center of conversations, tall and beautiful to boot. Like objectively, and compliments follow her everywhere. We just happened to find out that we made pretty great best friends, and it went from there. She'd have gone mental on the docs to try everything for me, still calling it if was the right thing, and I know that. She helped improve who I am as a person every day. She gave me a daughter that lands me ridiculous compliments about my parenting even though I mostly just worked a ton and leaned on my wife to make up for the support I couldn't be present to offer. My wife worked hard to be who she is as a person. If it's possible for her to play with her daughter in any capacity, or to see her first day of school in a few months, then i owe it to her to get her there. If it's not, then I owe it to her not to leave this state as her daughter's most prominent memory. Also, it's a weird dynamic now; I worry my daughter is going to associate mom with being the reason for less attention from me before, now that I'm working twice as hard to be available for dumb pretend games and stuff. There's no real worry free moments anymore, I'm learning. I guess this is just basically more venting, but also writing this out here helps me keep the best perspective on things I can. I guess. Maybe it will help someone eventually I dunno! Either way it's better than talking to myself or blogging about it and getting a million prayer image macros and useless natural remedy tips.
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Mar 1, 2016 18:19
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She woke up on the 2nd-3rd day, so ~18 days ago now. Sorta. So basically it’s weird finding out how her awful habit of grinding teeth / clenching her jaw at night was always driven by base reflex issues in her brain stem. As of now she:
And she had corneal / pupillary reflexes since ~24-48 hours in, but never had dolls eyes; currently has a fixed gaze. So . . . yeah, I mean, she “woke up” . . . To find restricted diffusion, bilaterally, in the splenium and semiovale. Doctors love the phrase “uncharted territory” and “we just can’t say for certain” when it comes to brain injury, because you can’t necessarily. Weird things happen. But look people buy lottery tickets all the time, but they ain’t going out and making actual plans before the numbers are drawn. That is the rough part, because you have to hope a ton or you won’t even bother trying to find things like the intrathecal baclofen pump stuff, and you are consciously aware the whole time that you're simultaneously setting you up for a wayyyyyyyyyy bigger emotional fall in the end--especially if you have to make the decisions. That’s love I suppose, though. It's where you look at the chart in the upper right and force yourself to think "OK, sure, 10%. That's definitely not impossible." and ignore the breakout of what that 10% looks like. 
FAN OF NICKELBACK fucked around with this message at 17:24 on Mar 2, 2016 |
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Mar 2, 2016 17:13
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she's off propofol and ativan and is still posturing like hell, but now it is pretty similar to when she was doped, except her eyes are wider and she isn't. also no poo poo she spit out her mouth guard and hasn't gnashed her teeth once since, also she moved her eyes away from the side of her head that was at rest. i mean poo poo is still very, very bad and this in no way is a good situation to be in to be clear. but man this whole baclofen pump thing needs a lot more attention
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Mar 6, 2016 06:16
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lol the baclofen causes sleep apnea so they can't wean her from the ventilator. even though she is showing her first full sleep/wake cycle ever, as in up all day and sleeping all night. See, since she pauses for a few seconds at night she has failed weaning in the first few days and that's a pretty dire situation it turns out it is the first criteria the insurance company requires in order to remain eligible to stay in a long term acute care facility as "showing progress" and the case worker was basically "welp, so you are what gonna take her home soon or pull the plug or what, i have actual people to attend to" so i get this amazing thing finagled into a lady on weak pretenses by a pretty alright doctor, and within 48 hours she's stopped grinding her teeth and biting her tongue, developed a full sleep/wake cycle and has seriously reduced unintentional movements. she sorta looks like she's constantly disgusted or surprised tho, and looks back and forth sorta snappy and like she's tripping balls. i mean again, still pretty poo poo and depressing, but man even i'm getting a little hopeful and that is a loving miracle in itself. however, she has a lil apnea now so hey "have you looked at any nursing homes?" so . . . either i drop the baclofen and deal with everything else and step backwards so they can take her off the vent or i just cross my fingers the apnea resolves . . . sorta quickly . . . woo. protip, only get into car accidents. do not drown or have a heart attack. if your brain rips in two you get a ton of healing and nurses/doctors on the edge of their seat for the latest update if you have anoxic damage you were a waste of everyone's time before they started pretending that they were going to give a poo poo man i mean i was all but given up but holy cow this stupid pump is actually doing things ugh but also it's still anoxic injury which i shouldn't really be snarky about people giving up on goddamneditall
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Mar 8, 2016 03:13
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she is moved to a new facility now and is steadily improving in inches every day what i mean is now if i play a video of our daughter or her or us or whatever on my phone to one side of her head, her eyes dart over after a pause and then her head follows suit. it's sort of cartoonish and really strange. anyway, so she'll stay on that side until I move my phone to the other side of her head, and then it will happen again. posturing is still happening, but i spend an hour a day working her joints and trying to push the limits of her posturing against me--joints are looser also. the baclofen does that too, decreases muscle tone which is what you kinda want in this situation. she only bit her tongue twice in three days, which is good, and they also got her mostly weaned from the vent. also i'm getting this going http://www.rehab.research.va.gov/jour/2012/497/aagpape497.html http://www.ncbi.nlm.nih.gov/pubmed/25613986 i mean, i know that the reality is that this is still pretty horrid, but she seems sorta impressive as far as improvements in this kinda situation go. Basically a week ago her eyes just sorta stared straight ahead or boobled around at nothing mostly while she jammed up her shoulders and gnashed on her tongue. i figure if i just actually do all the things that i find around therapy and make sure her meds are things that really have some level of proof of working then maybe it's not fair to compare her to all the tragedies that make up most of the stats. maybe that's what everyone says and does man i have no idea. i'm trying to get her off dumb seizure meds because she doesn't have any of those, and instead throw gabapentin into the mix since it might better help dysautonomia in combo with the baclofen. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117822/ here is a funny thing, when a loved one goes down hard from an anoxic/hypoxic event all of the doctors take all your suggestions etc if you link them studies. at first you feel really smart, then you feel super angry because why aren't you the one getting advice from them. then you kinda realize that literally no one has any faith that they'll come back from that sorta thing, so why the hell would they bother being a dingy person who pretends things are going to be ok by spending hours researching how to turn someone into a permanent burden doppleganging as a person everyone knew. which is sorta sad because man seriously . . . i am slowly accepting that this whole experience has been 50% grounded science that coming back from this isn't as likely as a TBI the other 50% being that it is a very long process and you might work your rear end off so that you get to wipe one forever. the docs must be basically "yeah ok look cool, i've seen this before and you're just going to dump this rear end in a top hat in a nursing home and divorce them in a year so . . . have you thought about letting them go instead of breaking yourself just to do that to someone." the prognosis' have started to feel like they're somewhere between a self-fulfilling prophesy and "they'll come back with great and constant treatment, but it'll be a little over a decade and they'll have permanent physical damage and you'll both be bankrupt." except also over half the time it's just a normal poor prognosis, only you can't tell which is which ahead of time. i dunno maybe i am a dope and this is just how you end up on one of those documentaries about this sorta thing, y'know where the family is yelling about doctors and love and how they know they're totally about to come back (for over a decade), and you look at it and are like "oh man honey no i promise i'd just be like 'yoink' and you do that too ok." I set a pretty firm timeline for improvements though, and she's scooting forward just fast enough to meet them so far. i didn't expect basically every day to see tiny improvements, and emotionally its almost more exhausting than if she wasn't any better at all. ugh i feel like a monster no matter what i do or think and i really just want to cuddle with her so badly it hurts my bones.
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Mar 11, 2016 07:27
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it's working. it took three hours of give and take, but I wiped her mouth with her own hand while she was in the middle of a storm. now ok most of you are like "ok who cares" but what i'm saying here is that someone with decerebrate rigidity becomes workable with 350 mg intrathecal baclofen and 200 mg gabapentin. the two play off each other and create a mostly unsedated and pliable situation. if you take enough hours to deal with that i mean. basically, ok and here is the terrible realization ok, i can't fix her. what i can do though is give her the foundation to come back, if there's enough left for her to do that with. peeps have been attacking anoxia wrong imo. everything is wrecked, so what are you doing trying to make someone do much of anything? just help their poor hurt brain not spend a bunch of energy on useless poo poo and keep their parts from freezing into really uncomfortable positions. her eyes followed her hand even though her pupils were mildly blown. that's pretty significant. not in the "oh man she's back" way but in the "holy cow there's some kinda, even if broken, pathway to proprioception." also when she "fell asleep" she displayed the doll's eyes reflex for the first time. which is even weirder, because it sorta backs up that she's constantly not conscious, but also that's a great sign that there's connections hanging around. i dunno jesus christ this is the worst
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Mar 13, 2016 05:16
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I debated on updating this thread, because y'know it's boring because i mostly talk to myself (can't comment on legal issues fyi, and sorta have to be careful what I reply to). For the last three days she's been intermittently handling requests to open her mouth and stick out her tongue--and it's not something she really does otherwise. she made a little noise for the first time today, and it wasn't a weird noise, it was just a normal "hrm." after I told her some big news. For clarity around the intermittent thing, I mean she followed it 4 times in a row yesterday, and didn't do it in the 2 hours before or after. Then she did it tonight out of nowhere, and kept her mouth open for the nurse to sorta sponge brush her teeth. However, she still has a tight jaw even if she doesn't have the teeth grinding--so it's hit or miss if you catch a window without any myclonic jerks. It's weird, because her face isn't palsied or what have you, and she's clearly trying to talk sometimes. It doesn't make much sense given the damage on the MRI, but also it's not really all that bad for someone who was only taken off sedation 2 weeks ago and was entirely vegetative. That said, the decerberate rigidity is pretty rough, and the myclonic jerks seem to be annoying and painful. Arms and legs :/ I'm actually starting to think that I was sorta right and the splenium only had a transient lesion from all the epileptic drugs that she didn't need--but that the semiovale ones were pretty real. Either that or Intrathecal Baclofen + Gabapentin needs a ton more attention. Dunno. It's been a month and a half since I last heard her voice, and I totally bitch cried. Nurses caught it all though and updated her charts; virtually every other day her coma recovery score has been climbing. I can't really find info that says whether or not the three weeks of heavy sedation counts towards vegetative time either. If so, then she's still within margins for an OK recovery, and if not she's in a window for a good recovery. I dunno though, because it's pretty rough to try to work up that much hope. This has, and continues to be, Some poo poo. FAN OF NICKELBACK fucked around with this message at 07:08 on Mar 19, 2016 |
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Mar 19, 2016 07:02
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hey thanks i wish i could share some pictures or videos because it's really weird for me to reread this whole thread right now, and also at the same time i don't want to give anyone a nutty impression like "everything is gonna be fine and she'll be 100% the same person" or "no don't write a will that gets you out of a brain hell because miracles happen" so let me clearly state for everyone in case someone else finds a similar situation (don't), she is going to be different even if everything pans out 100%. there is a guaranteed personality/behavioral quirk or two and/or some really lovely physical issues that'll need a likely few years of managing. that's the pie in the sky view, btw.
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Mar 19, 2016 07:24
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man me too, jesus me too. and yeah, katlington, ain't a not risky surgery for real also she is seriously trying to talk but the LTAC needed a bed and just threw her down to the rehab floor--and made sure to note that she doesn't follow any commands. or put any vital machines on her even though they had to suction her trach this morning 'cause she almost choked and had low oxygen and also ran +170/100 bp for two hours. she's anoxic you see so basically she's totally dead already except she did all the opening her mouth and even taking a deep breath on command stuff in front of the new nurses and this time, totally for real, they're definitely notating it. totally man, this time. totally. hopefully the transfer to one of the top neuro rehabs is smoothly started on monday
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Mar 20, 2016 04:32
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She used her voice today. I really don't know how to feel anymore. It was four times in a row on command. It was basically an open mouth hum, and it clearly took a lot of effort. But, I mean, this is some crazy and rapid improvement. She showed some very minimal control over her right arm on command, and her myoclonic jerks are a non-issue at this point, they're annoying at worst. Still some stiffness in her right arm and left leg though, and especially jaw. She was also able to battle her extremely tight jaw muscles to allow yet another person to clean the roof of her mouth and back of her tongue though. She clamped down on the tool when it gagged her. She was not only able to comprehend and act on the encouragement to relax her jaw and allow her to finish, but she able to work past the genuine tenseness in her jaw so he could get the tool back out and finish the job. She has never opened her mouth without a ton of coaxing or a specific sad song (her face contorts into open mouth agony. It's a dumb song tho.). I'm fairly certain she should not be capable of recovering this quickly. Doctors, sans "brains are mysterious magic sacks," seem to agree. I saw the damage, and it is both deep and profuse. I even called one of the most prestigious neurological clinics and managed to talk to one of the directors when this first occurred. He was probably the only person who understood what I was talking about, and his empathy could not have been more heartfelt. I knew that no one is ever going to prognosticate someone who isn't their patient, and rarely even when they are. I told that to him when I asked if he would make the necessary sacrifices, financially and otherwise, to get his wife into his own institution from thousand miles away in my situation. He, out of that same genuine empathy, essentially ended with "you just have to think about what your wife's wishes would be, because it sounds like you what the best for the both of you would be." Maybe she hits a wall, I don't know, but I feel like every day is exponential gains over the last two weeks. What the gently caress. ITB, gabapentin and piracitam (high dose). Auditory therapy from day one (F.A.S.T.). Just a psa for situations that are either pull the plug or pray, I guess, because I don't believe in miracles. I think it was the early intervention, but maybe she was just a brain miracle? Reality is super lovely sometimes. Who knows, maybe a nonsense scaling of the for real kind of quantum leap? gently caress the whole of everything.
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Mar 20, 2016 20:37
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You absolutely did not say say that. You said ok things, but definitely did not reach into anything profound or predictory, just safe and I mean really not the most detached from reality or or anything.
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Mar 20, 2016 23:17
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you monster
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Mar 21, 2016 03:15
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green chicken feet posted:I don't wish to give false hope, but the statistics for recovery may be so low partially because the average person wouldn't have that kind of dedicated helper. Our medical system doesn't have sufficient resources to do what you have done for every person in your wife's situation. The improvements would have been impossible without you. All I mean by this is that I think you are what is giving her the edge over others in the same situation. Just know the chances of this honestly ending well are still bleak. I get pumped because things are better than they could have been, for what that's worth. Ultimately, it's equally likely to have just sped her healing up, but not impact the end result. In fact I recently noticed that out of habit I'll hold her head to keep her jerking at bay, or lower the head to make it easier for her to open her mouth. Is that why she does it? Is it really on command, or simply that she can't override her clenched jaws otherwise? Who knows. nomadologique posted:i am guessing you are good partners because it sounds like you are both making superhuman efforts in the worst of bad situations. She was my best friend, she made all my successes possible and never doubted my ability to do anything. I always ditto'd that. We held each other up, and also planted each other's feet on the ground. There was a river of blood, sweat and tears we had to wade through together to get there . . . But it was with someone that made it worthwhile for the both of us. We hadn't so much as argued in months, and just laid plans for a very solid future. You have no idea how hard it is to not turn into a lunatic, to make sure I don't see everything as unquestioningly meaningful. There's a lot of road to left to go, and I'm already afraid I'll break.
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Mar 22, 2016 01:47
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In all seriousness don't worry about me. This is gonna suck for a while, and it's going to hurt for a while. She may never come home, and nothing will be the same again. She might come home, and nothing will be the same again. She might fully recover, except have no idea who I am and no interest in finding out. I'm gonna feel quite a lot of things for quite a lot of time, and so that's what I've been doing. That's all.
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Mar 22, 2016 03:55
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as a guy who sorta enjoys building a bigger picture based off statistics, i am very frustrated by the fact that hospitals are all independent and case studies sporadic. i cannot fathom how different medicine (as a concept, not just a thing that exists) would be if the clinical presentations of every person presented to any clinic anywhere were all fed into a database. i get it "big gubment" but seriously, we'd literally know pretty clearly what a good or bad prognosis for all kinds of things actually look like. i won't even say statistically, because at that point it would weigh so many variables that it would eliminate the various ways that doctors try to explain how magic and ethereal brains are for the most part. regardless that vent, she's getting her trach out tomorrow morning; scores still going up. it's a little disconcerting because i'm pretty certain that the damage in the semiovale and corona radiata (bilaterally) insinuate ataxic quadriparesis. also she meets a lotta the criteria of lance adams (action myoclonus), which both doctors and neurologists have not been able to rule out. "Action myoclonus is characterized by muscular jerking triggered or intensified by voluntary movement or even the intention to move. Attempts at precise, coordinated movements are especially problematic. Action myoclonus is the most disabling form of myoclonus and can affect the arms, legs, face, and even the voice. This type of myoclonus often is caused by brain damage that results from a lack of oxygen and blood flow to the brain when breathing or heart function is temporarily impaired. It may be associated with a condition called action myoclonus renal failure syndrome." everything is sorta like when you have a weird day as is but then someone you don't like is particularly nice to you for no reason. FAN OF NICKELBACK fucked around with this message at 00:02 on Mar 24, 2016 |
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Mar 23, 2016 23:36
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well yes. there was an op is all I'm saying guys. it is like, right there. original post. i feel like maybe you missed the gravity somehow, which is sort of weird tbqh.
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Mar 24, 2016 02:43
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There is very little information about anoxic/cardiac arrest recovery out there, so I'm going to keep this up as a public service. Unsurprisingly, the only other people out there going through this are lunatics. What little community there is talks a ton about literally impossible things like eventually getting a person back by drinking pine bark extract and whatnot. I've learned a ton, mostly by not reading any of their stuff, but she's passed a bar or two for minimally conscious--so that's a good thing. There's not really any solid timelines for recovery from there, it just sorta keeps going I've gathered. It's also painful and boring. I miss my wife a ton, and she's sorta in there--is a thing you will hear people who are trying to stay pragmatic say. It's pretty easy to project and anthropomorphize; it really does turn out that basically every quirk and habit that a person has gotten poo poo for is based way deep down in the near-reflex parts off the brain. Most likely why they didn't change it when they caught poo poo for it. The hard part is remembering that what makes a person who they are is how they process things and not just the reliable quirks that are cute and they can't change. Most of the people trying to salvage a person from this sorta thing talk about doctors not listening. I haven't had a single doctor not try something I've asked; the key seems to be actually researching a solution and presenting them with case studies. Weirdly, trying random bullshit has a very low success rate (or you bet your rear end every insurance company everywhere would cover it and force hospitals to use it as a first line treatment). She listens a bit now, and you can see she's trying. I think the worst thing is I was right from the start. Motor pathways are blown, so she can't really move anything well. One side is simply hosed for sure. Her leg is all flexion, pulls her knee to her chest obsessively, arm on the same side stiffly postures decereberately, head lunges down until her chin touches her collarbone on that side as well. Other side is mostly flaccid after the gaba investment. She'll try to do things on command with it intermittantly, and then after some attempts her face will get sour and she'll scowl a lot more. Then she wrinkles her eyebrows and opens her mouth limply in a silent cry. I keep pushing though, since I sorta have too--and if you didn't at least read the first few posts I made you prolly shouldn't reply about now--every day is at least one new thing still. Her mouth opens easier and more often, and her voice has hummed a few more times. She turns to look at whoever is speaking pretty reliably, and stays looking at them. She'll also look where a person used to be. She's still completely blind, you understand. I think she's going to get OK rehab soon though, some joint ran by a neurologist who's apparently well known and does huffpo and webmd stuff. Seeing as how I've been able to talk to a neurologist who's actually seen her in person for all of 20 minutes in total since all this started--I'm alright with that. There's a lot of implications in that, and I have no idea where we land--but I don't see it as being anywhere near where I was before all this. Honestly, I'm pretty impressed with her as is. FAN OF NICKELBACK fucked around with this message at 23:02 on Mar 29, 2016 |
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Mar 29, 2016 22:51
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Literally, this has been covered multiple times. I'm not happy about it either. I didn't want any of it.
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Mar 30, 2016 18:20
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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 FAN OF NICKELBACK fucked around with this message at 19:38 on Mar 30, 2016 |
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Mar 30, 2016 19:30
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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. 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.
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Mar 30, 2016 22:23
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Kommienzuspadt posted:I am pretty familiar with stem cell therapy, and your assessment is correct. I'm a bit more conflicted in my assessment of the person, but I wouldn't challenge them or yourself on it.
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Mar 31, 2016 01:52
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