I need help and answers!!


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Hello,

My name is Christina and I just posted an introduction somewhere on the messageboard, but came across this one and decided this is where I need to look for help.

Condenced story: On August 26, 2007 my 8 year old god-daughter collapsed in a store parking lot. They took her to the local hospital and then up to the near-by Children's hospital. The next morning (8/27) they did brain surgery and found a large brain tumor that had hemorrhaged in the left lower side of her brain. For 2 weeks they've been telling us that because she's young and healthy we had to wait and see, but they thought she would come around and eventually make some kind of recovery. However, yesterday (9/7/07) the doctors had a large conference with her parents and told them that when she hemorrhaged and stopped breathing in the initial event, she also had a massive stroke in her brainstem. They said it was higher-up and in the core of her brainstem. They told them that she is now at what they think is her baseline and there is really not much chance of any recovery.

She can blink her eyes and she can sometimes keep them open, without blinking, for a few minutes at a time. She's breathing on her own, but she can not support her neck or keep her airway open and clear. They don't think she can swallow on her own. The coughs alot and it seems her whole body moves when it's a really deep one and she also can gag. I guess there was some movement on her left-side and of her limbs the first couple days following the surgery, but there's been nothing for the last week or so. Although I did feel some twitching in her thumb and fore-finger when I was holding her hand yesterday. She seemed to be following some commands and directions the first few days as well, but no one has gotten anything from her for days now. Her eyes seem to track to the right-side, even when you ask her to follow a movement or voice.

They told her parents that they had two choices. One to take out her breathing tube and let her pass-way within a matter of minutes. Two, to trach. her and insert a feeding tube then move her to a rehab, not for her benifit so much, but to train her family on how to care for her like this for the rest of her life.

I have so many questions I don't know where to start. Which is the right choice? We want to give her a chance, but is it cruel to prolong this if there is no good out come? They tell us that there is no hope of retraining or restarting her brainstem, but the also told they can't be 100% sure she couldn't have some recovery. There's more, of course, I want to know everything. So any help you can give would be helpful.

Like I said, I have probably a million questions. But right now, I guess I want to know what to do next. What do I need to know. Please help with any information.

Thank you~~Christna

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Christina,

 

I am so sorry to hear about what happened to your god-daughter. My thoughts and prayers are with all of you. There are no definite answers we can provide as there are no clear steadfast answers when it come to stroke recovery. Personally, in my opinion, her parents should not give up. Many members here have survived and have experienced recovery after doctors suggested there was nothing more to be done. The stroke recovery road is a slow one to travel and is often filled with speed-bumps and potholes. Bless her heart, she survived what occurred as well as the surgery. Please come back to read the replies as well as to update us on her progress.

 

We're not professionals here, but we are a caring group. God Bless.

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My opinion: Give her every opportunity to recover for at least one year. People here have recovered after supposedly being a vegetable. After one year all the brain swelling should have receded and the parents can make a more educated decision.

 

2ndChance.

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christina, please do not ever give up hope on your god daughter. doctors always give u the worst case scenario, but people do recover from this type of stroke and it sounds like she is trying to improve. recovery is a long journey as donna stated with alot of ups and downs. she is young which is a plus in recovery. give her some time, she has come through so much already. i will keep all of you in my thoughts and prayers. alot of our members have had strokes at a young age and brainstem strokes also and are still here to talk about it. our motto is NEVER GIVE UP HOPE. please keep us posted on how she is doing.

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  • Founder and Owner

In my opinion, doctors are trained to prepare you for the worst case scenario. I think that almost every stroke survivor in our organization, including myself, would tell you of the doom and gloom prognosis they were given while in the hospital. She will probably need to be cared for the rest of her life but that certainly does not mean that she cannot have a decent quality of life. The thing about brainstem stroke is that they usually effect the motor skills but not the cognitive skills; at least that is what my practical experience has taught me. I'm not a doctor so I cannot give you medical advice but I am free to state my opinion. Her parents definitely need to learn how to take care of her, though!

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Hello Cristina,

 

I had a brainstem bleed in Kuwait and was treated by an Egyptian doctor who showed me what he was doing all the way through, the whols process was fascinating mainly because he took me with him every step of the way through the early recovery process. I later came back to UK where i did not get on so well with the doctor. If you have a good doctor who can explain what is happening you will find the recovery process much more interesting because you are more involved but everything takes time but do not try and find a reason as quite often they do not know.

 

Mike

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This morning, on the Today Show was a married couple who just lived through a miricle. The wife was near death one morning when her husband went to wake her up. She was barley breathing and he called 911. They rushed her to the hospital where she was put on life support. The Dr. said there was no hope for recovery. After 2 weeks the Dr. told the husband it was time to choose keeping her on life support in a nursing home or pulling the plug. The husband knew she would never want to live like a vegetable so he and the family decidded to pull the plug. The Dr. told them not to get hopefull if after they pull her off the machines she shows signs of life comming back because that happenes when they disconnect the patient. After a few hours she began oppenning her eyes and looking around the room. They all just thought this was part of the process and thought the end was near. WELL, she woke up completley and began talking and wanted to go home. There was no explanation for her recovery. She had speach therepy for a while and has some long term memmory problems but other than that is 100 per cent fine. Miricles happen every day so don't give up hope just yet. My husband was given a 25 percent chance of survival for the first 72 hours and he made it. Another miracle.

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  • 1 month later...

Dear Christina--My first reaction was I am not a dr. so even though I don't agree w/ their opinion, I'm not one to say she should be kept alive. However, after reading the rest of your story, I feel strongly that the drs are reacting too early to give the family gloom and doom.

 

Here is the reason why from my experience. I was completely paralyzed from a brainstem stroke. I was "asleep" for about a month, I think. I recovered my mobility and I am very lucky for the things I have regained. My doctors have explained, through the process of my recovery, is that blood filled my brainstem and injured those sites affected. During a long recovery, the blood drains or dissipates. As it lowers, the brainstem starts to heal and things start to come back One month is not long enough to know or determine what your goddaughter will recover or what she won't recover.

 

The other thing your goddaughter has going for her is her young age. You all must give her a chance to see what she can do. You will never know unless you try. I think the suggestion of waiting a year is a good one. Don't think that she will be fully recovered at the end of the year but it will be a good time to determine your next step.

 

I had a lot of people from around the world praying for me from all different kinds of religion. I think God said, Jeez, if they really want her that badly, I'll throw her back, which He did. You will be in my prayers and my thoughts. Good Luck. Take Care. LK

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I agree with the other posts here. I am truly sorry for your god daughter.. but the family should not give up! I find asking God is a good solution.

 

Hang in there and know God and we are with you!

 

*hugs*

Billie Jo

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  • 1 month later...

Christina, I am so sorry about your little God daughter. I would not give up yet. My brother in law has been in a coma

since April 3, o7. My sister cares for him at home. He cannot open his eyes, but does respond to outside stimuli.

He has not yet squeez our hand. He does wince and move his mouth and tongue as if he is trying to talk.

He is very healthy in all other respects. He breathes on his own. He is on a feeding tube and a trach.

It has been very hard for my sister to wait. The doctors said he would die within the first week. He did not.

I know it is hard , we wonder sometimes if we shoud keep him going. But when you really consider the alternative..

it just didn't seem right to us to let him go when it could just be a matter of time before he is able to wake up.

After reading all the success stories here in this website, it is very encouraging. We all pray for each other.

Please give God a little more time to do his work. Sisternlaw.

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christina,

i am truely sorry for what has happened to your god daughter. my reaction is to give her some time. she is so very young and has been through so much in a very short time. i would say that giving her the time will also give her parents the time to recover from the initial shock and make an educated decision based on her recovery progress. my thoughts are with you and her family. kathy

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  • 6 months later...

hi my name is angie ,i am so sorry, iam 33 had brain stroke at 31.always tell her keep fighting i ve gaind all movement back can walk 500 feet 2 months ago only 50 feet at 8 months doctors said i havent yet learnd how to grip a fork ,stand, hold my neck up,open hands they said i need to get used to my new life at 10 months i regained all .she is so young her brain is so young that will greatly help this tough long journey of recovery.

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large speed bumps and some very deep potholes........it takes a long time for recovery but if she has made it this far she will have GOD on her side for it is said of the disabled "the first shall be last and the last shall be first". give her some time to heal internally, the family can always pul the plug later, it's amazing what children can overcome and i know that her family isn't ready to give her up, every stroke is different and a majority of time doctors can be very cold. but that is not there child laying there cause you better believe that they would not hesitate to take her home if it was theirs. just have patience and let the brain re-wire itself read to her and tell her she does matter and how blessed you are to be with her.

i was on a feeding tube for a month, according to doctors i would not get off it and i should be put in a long term care facility, but i'm still here. every day on this side of the grass is a good day. blessings to everyone and hug her for me, don't give up hope, for hope springs eternal......

 

PRUFUS

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