Please share opinions & experiences re:wake time

[markandrain]

On Tuesday, February 10 (a week ago tonight), my 62 year-old mother-in-law, in otherwise good health, suffered a "severe" hypertensive intracerebral hemorrhage on her right side, by the right ventricle by the thalamus. She approached my father-in-law, complaining she felt faint, and as he put it, she "melted onto the floor". She was in the ER within 20 minutes. While there, she was coherent and joking, until she was sedated. Her blood pressure was 285/136. She's had high blood pressure since her 30's and took her medications off & on. She told the ER doctor that she had just received a new prescription but had not filled it. She was life-flighted to a larger, better equipped hospital (Palomar Pomerado Hospital in Escondido, CA) 8 hours later and given a shunt.

The bleeding stopped Friday, February 13-3 days post-stroke-and also that same day, the sedative was stopped. The doctor said it would take a few days for it to get out of her system. It's been exactly one week tonight since the stroke and 4 days since discontinuing the sedative, and she still hasn't awakened. We are told her movements, like her eyes opening half way, pulling her foot back when tickled, moving her affected side's left arm in response to a pinch, and trying to pull her arm away when the needle entered her arm during the drawing of her blood are all involuntary movements.

Our family had the conference with the doctors this morning who stated they can "make people live to 90 with machines" and that it's basically over.

My 2 questions:

1. If she has not awakened yet 7 days post-stroke and 4 days post-sedation, does this mean she will never wake up? (I would appreciate others' experiences with timeframes similar to these.)

2. What is this state in which she is? I just know she's not brain dead.

Any and all help would be appreciated greatly.

[sue_in_oz]

Dear Rain

Great news about your MIL :)  It's a long road ahead but she is making the first steps down it. All the very best for continued recovery.

It is my very great pleasure to provide what ever information & hope that I can.  I know that the road ahead is a difficult & long one but I know from personal experience if you put the effort in you will get results.  I am happy to share my hard won knowledge.

Kind regards

Sue

[Laj911]

Hi, good luck with your MIL..but I am knowledable about some of this and you need to know one thing ...stoke victims are GREATLY at risk for more strokes, especially the more severe they are...they often have more within hours, days & weeks after the initial stroke.  You can never judge one persons symptoms to somebody elses, all human bodies react differently.  Pray a lot, put your faith where it's appropriate for you and your religious beliefs.  Wait, watch PATIENTLY...as she has a very long road ahead of her.  Recovery is often very VERY slow.  The biggest thing that happens after a stroke is nutritional deficits/eating is difficult, swallowing etc...those things lead to body/systems break down and it can be very slow loss of kidneys, liver, lungs, etc...if she survives this initial stroke that is.  Know that ANYTHING can happen...don't have expectations...as there will be LET DOWN if you have strong expectations. Just take whatever comes one day at a time.  

[aimee1282]

Thank you, we're willing to try anything and everything at this point.  My dad was on ritalin and it was helping tremendously but he says he can't take it anymore, he constantly feels like he needs to be jumping out of his skin... I guess its just too much.  We're looking into maybe giving him an even smaller dose or trying the time release but the rehab center can't just order them w/out first justifying that they work... so we need to figure something out there.  

[aimee1282]

I'm so glad your mother-in-law is responding... we were having the same problems wondering if my dad could talk because he also had a trach put in.  If it is a non-fenestrated (not sure of the spelling) she won't be able to talk unless the cuff is deflated and this is only assuming that she has the ability to talk.  Most times it isn't because of the trach that the person can't talk it is just due to the injury.  My dad didn't start talking for 4 weeks and even today he can't talk alot and sometimes it doesn't make any sense.  It isn't that he doesn't understand what we say its just the word confusion due to the injury, he is unable to get out the words that he is thinking.  He is continually progessing so you can also hope for the same!  I was actually born in Jan of 1982.

[markandrain]

Thank you so much for taking the time to reply to my post. I can't begin to express my appreciation for the information during such a dark, uncertain time.

I am so happy to say that 2 days ago, my mother-in-law answered questions through eye blinking! She is finally aware of her surroundings! I don't know if she would be able to talk if she didn't have the tracheotomy. (That's assuming that a person cannot talk with one). Her progress is truly "dramatic" as her doctor explained and "wasn't expected".

Thanks again!

~Rain

PS Aimee, I'm wondering if you were born in December of 1982 (your username). My sister-in-law, my mother-in-law's daughter, is Aimee who was born in Sept. of 1982!

[joesi]

Got your note - GNC Amino 2222 (liquid). It helped but only a little. Recently tried HGH. Had some nice results too but this stuff is very expensive. On the order of between $400 to $1,200 per month.

[aimee1282]

I know i'm a little late on this... but my dad had a stroke 12/25/08 and was in a coma for about 3 weeks... so I wouldn't give up just yet especially when there is some movement and the hand squeezing is most definately voluntary. Movements such as pushing the arms down and away/turning in is a reflexive movement and also the response to tickle and pain, the thing to watch is whether or not the response to the tickle or pain is appropriate, is the person pushing towards the pain or pulling away, in which direction is the limb moving towards the midline or away.  

[sue_in_oz]

Hi

That's great news about your MIL:)  It shows you that she is there & doing what she can for the moment.  Hopefully you will continued improvement, albeit very slow for non strokees liking.

Don't rush the talking.  Even if her speech areas of the brain aren't damaged, speaking takes a lot of energy.  But do talk to her, let her know that you are there, etc.

Re friend in Tassie, I'm in Sydney, nearly 2000km away so I'm sorry but I don't know her.

HTH

Sue

[markandrain]

Hello, Sue

Once again, thank you for your help and for taking the time to do so. Two nights ago, my MI opened her eyes slightly and tracked something (pencil?) Last night, she responded to the commands: hold up 2 fingers, 3 fingers, follow this (object) with your eyes, squeeze my hand, and bend your knee!!!! Does this mean for certain she is not in a vegetative state? Should she be trying to talk yet if she can do these other things? This is the first we've been hopeful.

~Rain

PS I have an old "online" friend in Tasmania, Australia named Sue Mansfield who lost a precious baby girl Annalise. I don't suppose you know her?

[sue_in_oz]

Hi again & thanks - happy to help if I can

First of all I hope you MIL is progressing.

Second, is the hand she squeezed with affected?  If not, I'd put my (amateur) money on voluntary.

If it is affected, I thought that this early on it would be voluntary.  Later on, if she ends up with high muscle tone or spasticity, it could be either.  I know with my bad hand, once the spasticity set in, I could sqeeze real hard but had absolutely no control over it.  It usually takes a few weeks for spasticity to kick in if it is going to (which I hope it doesn't).

HTH

Sue

[markandrain]

Hello, Sue~

Thank you tremendously for taking the time to respond to my post. Your time and help are greatly appreciated.

I guess what I want to know is there hope. The doctors said they believe she is not going to recover and will never wake up. I'm not sure if this is based on the most recent CT scan 2 days ago, the fact that she hasn't awakened yet, or some number we were given that is the lowest number.

Did you mean that her hand squeezing was probably "in"voluntary since it's this early?

~Rain

[sue_in_oz]

Hi,

Sorry to hear about your poor MIL, hope she continues to progress. (I think the hand squeezing this early on is voluntary, later it might be tone relate, if on affected side).

I just wanted to let you know that she is in the very very early days of her journey.  Her brain has been through a massive trauma & is trying to heal itself - which means sleep, sleep & more sleep.  So that's what I suspect is happening at the moment. The utter fatigue I have felt since having my stroke is like NOTHING I have ever felt before & that includes 31 hour working days!  That's the one thing all us strokees have in common even though all our other deficits are different.

Please keep supporting her & loving her - she needs you all to help her through this long dreadful journey.

HTH

Sue

[markandrain]

I just found out my mother-in-law squeezed a nurse's hand in response to the nurse squeezing my mother-in-law's hand. I have a feeling the doctor will say this is an involuntary, though.

3. Is hand squeezing voluntary or could it sometimes be involuntary?