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Anoxic Brain Injury/ABI from Sudden Cardiac Arrest/SCA

NWWriter
3 Recommendations

I'm tossing this topic in for discussion because I'm finding that the stigma of "brain injury" (or the more sweepingly-frightening term "brain DAMAGE") often stops people from admitting that they have problems after anoxia (lack of oxygen) events. Simultaneously, loved ones are often so relieved that the survivor has survived death that the initial reaction of "Whew! Glad we dodged THAT bullet!" is so prevalent they don't understand that there may be hard-to-see brain injury lingering after the event has passed. The survivor may or may not want to look at the possibility of bi due to unawareness or prejudice (who wants to be one of "THOSE" people?) and so the stigma AND injury have to be overcome simultaneously.
I survived an SCA in 1987 and the fourteen minutes of anoxia caused a brain injury for me that I like to describe as "very narrow and very, very deep".
As you can probably detect, much of my brain wasn't damaged, and, in fact, I had some surprising improvements in some of my skills (typing, for example!) but the neurological paths which were damaged caused chaos for years before I went to the University of Washington's Brain Injury Clinic for an evaluation and resulting rehab.
I'm initiating this discussion because online is a great place for people to discuss their fears anonymously and I don't want folks to think they're crazy or alone with their concerns and questions.
Mary L
SCA 1987 while playing softball with friends near a Fire Station.

Explore topics in this discussion:

Surgery Sudden cardiac arrest Acid reflux Dry mouth Pregnancy Dialysis Anorexia Zolpidem Provigil Ambien Epilepsy Stress Arrhythmia Anoxic brain injury Stroke Fever Physical therapy Cardiomyopathy Weakness Edema Speech therapy Cerebral palsy Occupational therapy Brushing Morphine Pneumonia Stent Zoloft Heart disease Dehydration Miscarriage Seizures Suicide Pain Pacemaker Ritalin Memory Sedatives Heart attack Depression

96 replies

Mydad46

My father went to the hospital complaining of a severe stomack pain. As a result he had his Gallbladder removed. After the surgery he was alert and talking with us in his room. We left him as we went home he was watching T.V. We recieved a call from the hospital the next morning, informing us that my father had stopped breathing and that they had to resucitate him. According to the Doctors, he was without oxygen for 5 minutes. When the doctors conducted a CAT SCAN and EKG, they told us that he did not suffer a heart attack or a stroke, so they did not have an answer for us as to what went wrong. They conducted an EEG exam, and he does have some brain function. My father has been in a coma for 2 months now. We requested an MRI on his brain, and the exam came back with brain swelling. Can anyone help me out with this stuff situation? I would greatly appreciate your help.

Thank you!

NWWriter

Hi Mydad46,
I'm so sad to hear about your Dad. What a heartbreaking story. And I'm sorry I don't know anything about this category of neuro-psych injury. I encourage you to seek more support and/or information about his condition via a second neurological opinion. I'm very aware of the WALL the medical community can put up when it's aim is self-protection, so if you have any underlying anger about the situation I suggest you not show it if you want to get anywhere.
And for what it's worth, I was only in a coma for a few days but I do remember people talking to me, so don't assume your Dad's completely out of touch while your seeking some answers. Reading out loud to him might be a possible activity to consider.
Mary L/NW Writer

Mydad46

Mary,

Thank you for your support and help.

KareyH

Mary,
I just came across your story while doing an internet search about Apoxic Brain Injury. My husband Jimmy suffered cardiac arrest on 12/26/08 and was deprived of oxygen for 9 minutes; this is my guesstimation based on my call records to 911.
Jimmy is still in the hospital, although it's a hospital specializing in brain injury.
I've been told that Jimmy will never return home and will require nursing home care for the remainder of his life (he's 45! ). Then again, I've been told at least 5 times in the last 10 months that he would not survive, yet he's still here.
Please forgive me for saying this as I mean no disrespect, but how is it that you are able to post your story? Jimmy can't even remember my name, although he does remember me as "baby", someone who loves him and he loves.
I am very intrigued by your story and want to know more about you and your recovery. Your story is really the only one who gave me hope that Jimmy might recover, at least enough to be functional, which right now, he is not.
I'd really love to hear more about you and your recovery so I hope to hear from ou soon.

tkandr

I have a dear friend whose husband had heart attack last week and I believe he had loss of oxygen for a few minutes. Could you please let me know what helped you recover from the brain injury you sustained and what she can do in the early stages to help. Also what responses should she look for to see if he is actually responding in these early stages? I can't find any information like this on the internet so if you have anything that would help me guide her to try things that would help him, I would greatly appreciate it. Thanks. Carol

Axykatt

KareyH,

On October 15th 2008 my husband collapsed from a ventricular fibrillation. Our 17 year old adopted daughter was with him at the time and immediately called 911 and began CPR. The ventricular fibrillation was caused by a cardiomyopathy that was only diagnosed on August the 26th following a stroke. He was almost entirely recovered from the stroke and his prognosis was good. Although our daughter began CPR right away (she didn't waste any time with hysterics or trying to wake him since she knew about his heart) he still seems to be suffering from anoxic encephalopathy. His initial EEG was normal and MRIs and CTs showed no new brain injury, but he still has yet to make any significant improvement. He opens his eyes and turns his head towards voices (inconsistently), but doesn't respond to commands or show much real awareness of the world around him. The doctors won't tell me what the stages of recovery are, or what I should be looking for when I sit with him. He is being weaned off the ventilator this week, and has no organ shut-down, but that is all we can really say. Oh, one more thing, he's only 25.

I would give anything for just the level of awareness your husband has. Can you tell me anything about the process so far? What levels did you go through before he could recognize you at all, or call you "baby"? What treatments have you tried? Has anything helped? My husband, Vic, is so young but it seems like everyone but me has already given up on him. Any information would help give me direction. I hope your husband does continue to recover and my thoughts are with you. Have you tried Ambien? Those trials looked very positive in the UK.

Thank you,
Alexandra

terriwinget

Hi Alexandra & all,
I'm very sorry to hear about your husband Vic. I hope that you've found there are a lot of people here who care and will support you through such a difficult time. I am glad to see that this topic is being added to here, as there is very limited information regarding positive outcomes after ABI on the Internet. I know this because I have been researching for over a year now.

On Sept. 29th of 2007, my husband (who was only 38 at the time) also had ventricular fibrillation and suffered an anoxic brain injury. I know exactly how you feel, looking for answers that no one can provide for you. It's very difficult because every person is different and the outcomes are never identical. Patience, time and hope - keep those three words in your head at all times.

We are not sure how long exactly my husband John was w/o oxygen. I was with him when he collapsed. I started CPR on him immediately while my neigbor called 911. They got here relatively fast, but they had to shock him 4 times over the course of 20 minutes before they stabilized him enough to transport him to the hospital. They put him into a medically induced coma and placed him under hypothermia treatment for 24 hours. It happened on a Saturday morning and by Monday morning they were able to take him off of the ventilator. On Wednesday, he woke up, but they still had him heavily sedated. John's recovery was remarkable and very fast in comparison to other people's experiences, but there were a lot of steps to get to where we are today.

He was in the hospital for two weeks. During those two weeks, he had no memory of anything. Not past or present. He was very flat emotionally, said the most off-the-wall things - very much like Rain Man. I was told at the time that he might not ever recover. In the hospital, he had PT, OT and ST. The plan was to transfer him to an inpatient rehab facility, but instead - I brought him home and had therapists come into our home. He needed 24 hour care, so I took FMLA at work for two months. I hounded him constantly - asking 50 million questions a day. We played a lot of games, like cards and dice games to help stimulate his brain.

When I look back and read the evaluation his case manager wrote when she first met us...it's crazy to me. I still can't believe how bad it was. He couldn't remember anything for two minutes, didn't know how long we'd been married, couldn't name five presidents... After about two months, things were really starting to come together, so we took him to the University of Washington to have an all day neuropsych evaluation. He did mostly well, but there were still some deficiencies with his executive skills (being able to plan, organize things and thoughts, problem solving, etc...). But, he felt good and was becoming more like himself. We both went back to work by the first of the year. The past year hasn't been easy because of the "lingering" things like his personality changes and stuff like that, but as a whole -- he's alive, functional, goes to work... A year ago, I would have NEVER thought this was possible.

So, John was fast... But let me share with you another story that just might put the icing on your hope cake.

http://www.caringbridge.org/visit/jasonvoigt

The link above is a journal that has been written by Jason's mom. Jason went into v-fib on Oct. 1st. I think that it will really help give you some kind of a timeline. Jason is the brother of one of my coworkers and only 31. I think that story might help you more.

For now, I would just keep doing what you're doing. All of John's doctors and therapists were great, but TIME was most important and the best "therapy." The brain is a crazy, mystery organ, but heals itself every second. Keep in mind also, that they probably still have him on a lot of different medications?? Do you know what they have him on right now?

Just keep talking to him and touching him. He's going to come around - I just KNOW it. I bet when the ventilator comes off...you will start to see some changes. It takes some people more time to come out of the coma state, but once they do - LOOK OUT! That's when the fun begins.

As for friends...I KNOW!!!!! One of my closest friends, when I needed her the most refused to come around because she "was uncomfortable." Needless to say, we are no longer friends. Just keep coming here. We'll help you out. XOXOXOX Hang in there and keep posting.

Terri

fishermanguy

Glad to find this group. I had a SCA in November 2006 and was given CPR (chest compressions only) for 6-7 minutes by a co-worker until the EMT's arrived with the defib. Like many of you I was in an induced coma for a while and then spent a week in CCU and though I was conscious and I could remember things before the SCA, I wasn't making "any new memories". Upon release, I was foggy but I started making more memories. I tried very hard to hide any effects of the SCA and was to ease back into work in less than 60 days. I've been told I'm on the top end of the neurological studies but I know that I'm not quite right.
I just started a study with 7 other SCA survivors and I'm the only one able to work (I am only part time now, full time was too much for me). The study has opened my eyes to the impact of the SCA on the brain and it explains much of what I've been feeling. Like Mary L, everyone is so glad I survived, that my new shortcomings don't seem to be effecting others. However, before this study I was very frustrated with things that I couldn't do as well as before, but now the pressure is off. Pschologically I feel better but I now have to deal with my performance at work and possibly make a change to a job that doesn't constantly remind me of my limitations.

Axykatt

Dear Terri,

Thank you for your reply and the link the the website. I will be looking more closely into their story.

Today is day 30 since Victor's collapse. He is off the ventilator and has been on no sedatives since the fourth day of his "recovery". The only medications he is on are his heart medications (he has cardiomyopathy) and Atavan once a day in case he has seizures. He hasn't had any since day 2, but they just want to be sure.

He hasn't progressed as well as the doctors hoped. While he can't be labeled as "vegetative" because he has obvious responses to slight discomfort (like sitting in a position he isn't comfortable with, or having a dry mouth) he is just barely meeting criteria for "minimally conscious". He does not interact with the people who come to visit him in more than a very basic way, such as turning his head to the sound of a voice or brief periods of visual tracking. He receives physical therapy every day, but there has been no significant improvement in the last month. Today I am bringing him flash cards to try to help him communicate in some way.

I miss him so much.

-Alexandra

frustratedaughter

Terri,

Your message makes me feel so hopeful. My mom suffered SCA 1 week ago. They did the hypothermic treatment for 24 hours, she woke up and was taken off the ventilator. She is really confused. She bounces between 3 months ago and 1961. She keeps realizing my dad died and becomes really hysterical. He died 8 years ago. I can see progress and I really believe she'll get back to close to where she was. She was a brillant woman. She'll be discharged to a rehab center this week. She's 81, but her heart is in good shape. Reading all these stories gives me so much hope. When I'm with her, she keeps repeating herself over and over again, but there is a little difference each day. She is retaining more and more information. It's like her mind is going in circles though. The one thing that is amazing is that she has turned into the sweetest person - she actually used to be really difficult. She is much nicer now - it's so strange. The scariest part is wondering if she'll be able to get back to living on her own and going to her house. Reading these stories do make me think her progress is good. Even though she remembers many things about the recent past, she can't remember anything about the house she has lived in for the past 30 years. I don't know why...Maybe if she saw it?

terriwinget

I am so glad that sharing my experience can help and give you hope. Frustrated Daughter, I can very much relate. It has been so interesting to find so many similarities in one's road to recovery after SCA and brain injury.

John was stuck in 1997 for about two weeks. I still haven't figured out what happened that was so significant in '97. :-) He repeated himself constantly also. When he had collapsed, he fell on his face and broke his front teeth, so for about 3 days straight all he kept saying over and over again was, "My teeth are #$@% up. His swearing was out of control!! He even swore in front of his Mom, which is something he would have never done before.

One thing about your Mom's home... When I was bringing John home from the hospital, he told me that I was going the wrong way. He thought that we still lived where we had 13 years prior. When we did get home, he didn't remember a lot of our stuff. It was like Christmas for him for a while. I kept finding him going through drawers, going "Hmmm."

Although, I sure do feel like it helped him to get back home to a less confusing environment than the hospital. I bet when your Mom gets home, she will progress more and more each day.

It sounds to me like she is recovering very fast!! That is great! The hypothermia treatment is so incredible. I firmly believe that it makes all the difference in the world for a positive neurological outcome. It's funny that she's a nicer person now!

You sound like you have a wonderfully positive attitude and that sure does help!!

I am glad that you found this site.

Hang in there!!!

terriwinget

Alexandra,

You are such an incredibly strong person. My thoughts, prayers and heart go out to you and Vic.

Do you have close family nearby who can help you through this? I am so sorry for the grief you are feeling. And it is grief... Many people don't understand that part because your loved one is still alive in their eyes. But it is like having your insides torn apart because you miss him SO much.

I know how much this situation can consume your whole existence, but please try to take care of yourself too. Even it means taking a day off to get some sleep.

Please don't give up hope. You want to prepare yourself for anything, but it's not time to give up hope yet. He has a wonderful companion to help pull him through this. I think the flash cards are a good idea.

One day at a time, remember that. I will keep searching for stories to help you through.

XOXOX

Aaron-Pennsylvania

Hi everyone,
All of these stories and comments touched my heart and I felt compelled to join this group to help others and to heal myself. It is very difficult for anyone outside of the realm of this type of injury to even begin to understand what you (we) all go through during this period of waiting. I know because today is the 2-month anniversary of my precious Samantha's SCA and subsequent ABI. (Please excuse me while I wipe the tears away). I just want to say, that while you feel alone and confused, there are people out there who can relate and possibly help you get through this most difficult time. The hardest part is the waiting and not knowing what the future holds for you or you loved one. No one can predict or tell you what the outcome will be, and while you look for answers, you have only questions, hopes, and sometimes doubt. These are all natural thoughts and part of the process. I know, because this is what I have experienced, in addition to many other thoughts and fears.
This unbelievable journey began on September 21, 2008, and the ride is far from over. We were in bed at home that night and Samantha just suddenly collapsed. She was not breathing and had no heartbeat. I immediately called 911 and began CPR. She aspirated vomit and did not respond at all to my resuscitation efforts. The medics arrived in a few minutes and I watched them feverishly work on Samantha, shocking her heart at least twice. They were able to re-start her heart and she was breathing on the way to the hospital.
She was in the local hospital for a week and was completely unresponsive. We decided to move her to a better hospital (Hershey Medical Center) and had her seen by a team of neurologists and cardiologists. In addition to being in a coma, she had pneumonia and didn't seem to be doing too well. The doctors told us only that we would just have to "wait and see."
After 2 weeks, she began to respond to some stimuli, was far from conscious, but stable. Week 3 brought responses with her eyes opening, but there were no real signs of her knowing whom we were or what was going on. Finally, she began to be able to breathe on her own and was taken off the ventilator.
Week 4 we were told she needed to be discharged to an acute rehab facility where she spent the last month. She was just discharged home to her mother's house today (11/21/08) and she seems happy to be home.
The time we spent in the rehab center was tough. She couldn't remember anything and was having a very hard time doing anything for herself, including bathroom trips, eating, walking, talking, etc. I'm not sure what was easier for me, seeing her in a coma or struggling with normal every day activities. It is very frustrating, and again, not knowing what the final outcome will be makes this so difficult. She can't take care of herself now and may not ever be able to do so. I am hopeful she can return to a normal life in the coming months and years, but we wont know until this time passes. Her lack of short-term memory and constant repeating of made-up stories (confabulation) is especially difficult as well as her not remembering most of the time (6 1/2 years) we've been together. She knows she loves me but doesn't remember why.
It's amazing what changes occur to you and your life when something like this happens. You see what you're made of and you find strength you never know you had. You also cry a lot wondering what you could have done differently or many other "what-if's." You have to put those thoughts out of your head, because only God knows what His plan is and you just can't second-guess this fate. Trust me, I have had thoughts that she may have been better off with a different, more permanent outcome. But then I think, who the heck am I to make a judgment like that??? I don't know what's going to happen in the future and feel that my thoughts are sometimes inappropriate. Maybe these thoughts are wrong and selfish, but they enter into your head and you have no control. (I can’t believe I actually wrote that, but it’s the brutal, honest truth of what I thought and the pain I felt and continue to feel).
Well, this is my “short” version of the story and I don’t know what else to day other than “hang in there.” It’s all you can do now while trying to stay positive even when things seem hopeless.
I look forward to hearing from some of you out there to share with me (us) your thoughts and experiences. I pray that some day Samantha can read this and share her story with others who have to go through this terrible experience.
Just keep praying and take care of yourself and your loved ones.
-Aaron

lisabob

Hi everyone,
I can't believe I found this place...I have been searching for information on anoxic brain injury for over a month without much luck. Finally, I have found a group that understands what I have been going through. All of your stories have touched me and Terri you have given me so much hope that I had to tell my story:

On September 29, 2008, exactly one year after your husband had a SCA, my father had a cardiac arrest and collapsed. My mother called 911, but she was unable to pull him to the ground (he was in a chair) and begin CPR. So, she's not sure how long he was out before the paramedics shocked his heart and stablized him, but we estimate 5 to 10 minutes. He was in a coma for a few days and the first day was very touch and go. He kept going into v. fib. and his heart had to shocked again. We could tell by the way the doctors and nurses spoke to us that they didn't expect him to make it. His first nurse in CCU wouldn't even look us in the eyes when we asked her questions.

But remarkably, on day 3 he became alert. The nurse working the night shift said she went into his room and his eyes (which had previously only opened for a few seconds at a time) were open and followed her around the room. He was eventually taken off the ventilator, and he could speak a little. His heart was so weak he had to stay in CCU for 11 more days, and they implanted a pacemaker and defibrillator.

After his surgery, he went out onto the floor and a private room where he remained for another week. During this time my mother and I brought in flash cards, playing cards, pictures, coloring books, mazes and words finds - mostly stuff for 1st graders. We worked with him everyday. Some of the games were way above his capabilities (mazes and word finds), but he could play poker if I reminded him over and over how to play. He also couldn't recognize the people and places in the pictures, at first, but everday it seemed there would be some small improvement.

Finally, he was transferred to rehab, and we thought that would be his salvation, but we were wrong. We found the treatment (or should I say lack of treatment) deplorable. Once while visiting him I waited for over 1 hr and 45 minutes for a nurse tech to show up and take him to the bathroom (if I thought I could have lifted him I would have done it myself). And when he contracted a urinary track infection, and had to be re-admitted to the hospital for another week, we decided not to send him back. Instead we opted for home health care.

Now he is at home with my mom and gets OT, PT and ST. He can walk on his own but his gate is off and is prone to falling. His memory is bad: he has lost the last 10 years and sometimes he doesn't believe us when we tell him what has happened to him. I wrote out his story so that everyday he can read what he has been through. I titled it "Pop's Story", and the first time I showed it to him he cried. We have shown it to him countless times, but each time he says he has never seen it before. He may not consciously remember reading it before, but he doesn't get upset anymore when he reads it, which tells me that on some level there must be some sort of recognition of this information. The same thing is true when he asks about his mother (who has passed) or a favorite dog that has died; at first he would become upset when we told him they were gone, but now he doesn't.

Today, however, was a bad day. He thought I was his sister and he argued with me that we were in Columbus, GA (a city he hasn't lived in in over 40 years). Worst of all, though, he fell and busted his lip and bloodied his nose. I felt so awful, like a parent who lets their child get injured; I've cried all evening long.

Somedays seem good and somedays are horriable. My father use to be an intelligent hard working man, and I wonder if I will ever see him, that man I use to know, again.

So, thank-you, for giving me hope, on this day when I truly needed it.

Lisa

terriwinget

Hi Lisa,

What's with September 29th? :-) I am so happy that you found this place. There is so much support here and there is always someone who can relate to your experience, fears, moments of despair and triumphs.

Our experiences sound SO similar and I truly understand the bad day you've had. I think the hardest part is missing your loved one. They are there physically, but when you look into their eyes, they are not there. I remember John saying, "Really?" all the time when I would tell him something I told him 100 times. Like everything was brand new.

It made me smile to read that your father was playing poker. One of John's therapists played 10,000 (a dice game) with us and it impressed me that John could play. He struggled a bit with the adding, but the competitive side of him was definitely there.

I can relate to the arguments too. John was so convinced and SO matter of fact about so many things. I didn't know how to handle it at first. I would argue back and get frustrated, but learned that it was part of the process. He still does it sometimes and now I just laugh and say, "okay." The stories he tells and believes are not as major as they once were...like our living room being the airport terminal with planes outside. Now he just argues that we've been to a certain place before when we haven't (there is a lot of that kind of stuff).

I'm sorry about your experience with the rehab facility. I haven't been able to understand why there isn't better care? I had never had experience with any rehab facility, I had just "heard things," and was really terrified of John going into one. I realize every situation is different, but I am glad that your Dad gets to be home, as John was. It's a lot of responsibility and scary at first but the care is so much better.

I hope you know that your Dad falling isn't your fault. It is SO hard when they are unstable and much bigger than you. We have stairs in our house and I was so afraid of John falling. I'm not sure if your Dad is like this, but John wanted to be so independent and he would get mad when I'd try to help him...so that makes it even more difficult.

Hang in there Lisa, it will get better. With each day, you will see more and more of your Dad coming back. It's a rollercoaster and probably one of the hardest things to ever experience, but time will set everything back into place. Don't be afraid to share your feelings with the OT, ST and PT. They are very insightful and understanding.

Keep reading all of these stories too! There are so many miracles here.

We are here for you. :-) X O

lisabob

Hi Terri,
Thanks for your encouragement! It makes me feel more at ease to read that John behaved in a similar manner to my father. Maybe this is all part of the process.

I think it's so funny that John thought your living room was an airport terminal. What is up with the crazy stories? The other day my father claimed that he went to mars in 1997 or 1998, not once, but twice! When we questioned him about it he even had an elaborate story about how he got up there. He use to work for NASA, so maybe he heard something about someday going to mars, and now it is jumbled in his memory - that's what I think, anyway.

Today was a better day; he knew I was his daughter, but he doesn't remember how his face got bruised. The best of today was that my mom and I decieded to try and play yatzee with him. I really thought it would be beyond him, but he did really well. He was able to add his dice, and more impressively: he beat me and lost by only 1 point to my mother. It's strange that when I ask him if he remembers how to play a certain game (yatzee, dominoes, solitaire, poker) he always says, "no" but when we begin to play it's very clear that he does remember. He knows which cards go where, or how to add dice, or what beats what.

The funny thing about poker is that before his SCA, he was a very tight, cautious player; he only raised or bet when he had a hand. But now he's in there betting and raising all the time! I never know what he has, and he has even bluffed me. It's almost like he is more uninhibited, at times.

It's really amazing how the brain works.

Thanks again for the respose, your words have given me so much hope for a brighter future.

Lisa

rantingmum

Hi, what an amazing place with some tremendous stories, and yes your comments about finding comfort from others who have been through this with a loved one can really help.

My story is that of my little boy Jack who is now approaching his 9th Birthday, almost 2 1/2 years ago when he was just 6 he suffered a cardiac arrest (undiagnosed Hypertrophic Obstructive Cardiomyopathy) during morning break at school and collapsed right in front of his best friend and other kids too - his big sister (13 at the time) was at the school and witnessed him being carried into school past her grey and lifeless). School staff did CPR initially and within 10 minutes our local Air Ambulance arrived and after about 30 minutes of no oxygen he was brought back. We still see the crew often and help fundraise for them and they have told us that they were deeply affected by what had happened, nothing like the potential loss of a child to spur them on, the pilot did later tell me that he did not know for ages whether they did the right thing - but seeing him smiling in my arms 8 months later confirmed they had.

Jack was put into an enduced coma, he was breathing pretty much on his own within hours with a ventilator for 2 or 3 days just supporting his breathing, he had pupil response early on so signs looked promising, until on day 2 when he was taken off sedation he had a major seizure which following an MRI confirmed that his damage was global with very poor outcome!! On top of this we still had his heart condition to address, and 3 weeks later he became the recipient of a pacemaker and defribulator. We had to face the moral dilema about quality of life etc, but at the same time we wanted to get him into rehab, and to do that he needed to be stable cardiac wise - so yes we had to make the decision to have the metalwork put into his little body that would enable this.

He spent 2 1/2 months in hopsital and then 7 months in rehab, before coming home - which was just the best thing for him as he became more relaxed at home.

Jack does still have severe disabilities, he can't walk, talk, eat or see very well, but he can hear and is loved to bits, his vision is improving and he now does have hysterical fits of giggling laughter to silly or rude sounds and stories or films that he liked before, he always had a cheeky sense of humour and loved to make up jokes, we now use some basic technology that helps him do this with some help from us and his friends, and best of all he looks into my eyes and smiles when I say hello in the morning or when I pick him up from school.. He also still tries to talk sometimes and it's like he remembers to do it instinctively but then his body lets him down, but we have so much hope - yes I dare to hope!!

His recovery may not be as dramatic as some here, but he is still here and I get to cuddle and tuck him up at night. We have so many other hurdles to overcome, but we are getting there - very slowly.

I have started up a website to help any other parents or loved ones who go looking for help, and there are therapies out there that can help. I am a strong believer in good nutrition/supplements to help the body heal itself, Jack is very healthy (brain and heart excluded obviously) and is not plagued by the chest infections and other problems that children and adults in his state are. If you want to have a look please feel free - it is a work in progress and am sorting out some errors but there are some uselful links - especially take a look at Hyperbaric Oxygen Therapy (HBOT). All the forward thinking stuff I seem to come across seems to come from the States, here in the UK we can sometimes be very backwards and too 'traditional'. We are starting to fund raise now to get a portable chamber at home, which I will need to buy from the States.

Many thanks - Tracey, United Kingdom 29/11/08

rantingmum

Sorry it's late here in the UK and I forgot to add the website address: www.jacksjourney.co.uk.

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sammy29

Hi all. I'm new to the website, but very glad I found it. Unfortunately there isn't a whole lot of information out there on ABI. I'd like to give my fathers story in brief.

on June 30th, 2008 my 58 y/o dad was on his way to work when he pulled over to the side of the road and walked out and fainted. He had a SCA and luckily it was witnessed but CPR was not initated until 10 minutes later. On arrival of paramedics my dad was still in cardiac arrest and it wasn't until 7 minutes later when they arrived at the hospital when a heart beat was obtained after multiple shocks. So an estimate of 17 minutes is what we are assuming. He was in a coma for 2 weeks and in the hospital for a total of 6 weeks. He was transferred to a rehab unit for another 5 weeks. At the time of discharge from the rehab unit, he could only eat and mumble few incoherent words. When I was in the hospital those first few days, the doctors told me he'd never leave the hospital and would likely require longterm subacute facility care. DON'T Listen to doctors who give firm predictions, cuz with the brain that is just impossible to predict.

All of my dad's CT/MRI/EEG were normal. Now at 5 months from his event, my dad is walking, eating and bathing independently. We cannot leave him alone as he gets confused. My dad has SEVERE memory problems. He cannot form new memories. For example, when we tell him his story he doesn't believe it and when he finally does, he forgets within minutes. His physical skills are impressive, he can even ride a bike. He was an aerospace engineer and he can still do math but unfortunately he can't remember much and his executive function is lacking. Still 5 months out was wondering if anyone in similar situation with significant improvement at 1 year. Even if my fathers memory is shot, I would love him to have INSIGHT into what is going on and what happened to him.

I really miss my father.

caya

Hi,

I've read everyone's stories and I am so sorry.....I wish you all the best of recoveries for your loved ones.

What happened to my father is the most painful thing I've ever been through.

My Dad's story can be read here:
http://www.freewebs.com/johnkirkwood/
it includes a blog that I did to help keep family and friends informed of his "recovery". I was full of hope back then.

I haven't updated the website in nearly 2 years.... not much to write anymore.

Despite the fact that doctors told us that Dad would not deteriorate any further, he has. He now no longer talks, he just says "hmmm". He no longer reads books or writes. He isn't interested in anything in fact. He is content just to sit in a chair all day and look out the window or lie on the bed and sleep. He can walk, but only with the aid of a walker. He has trouble keeping his food down sometimes. He remembers absolutely NOTHING of his life or his family and cannot make new memories. It's a very sad situation.

Dad was a brilliant man and so intelligent....to see him like this is still unbelievable to all of us.

-Catherine

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