Anoxic Brain Injury Survivor Stories

January 2005

We have arrived at the five-year mark. In some ways the past five years seem very short, and in other ways they stretch a lifetime. I am still reading everything I can find about anoxic brain injury. I am still trying new drugs or exercise machines, anything that might help.

Having an aide who loves Earl has made life a lot easier the past 18 months. It’s expensive but the only way I can leave and go to work. I have to work to continue the health insurance, which pays for everything for him. Our children have also been a constant source of support.

At five years Earl can, when he feels like it, have a simple conversation and answer questions. Even some questions about things in his long-term memory get answered correctly, such as people’s last names or the college he went to. He still cannot name his own children or remember consistently that there are five of them, or consistently say what my name is.

He doesn’t grind his teeth much any more and most of the damage to his teeth has been repaired in surgery at UNC Dental School. What he does instead is swear like a sailor whenever and wherever he feels like it! I do a lot of apologizing when at the mall!

He remains incontinent but the bowel program takes care of the bowel movement once a day, and usually we only need four diapers a day.

He never has learned to stand or sit alone or turn over, but does help with transfers.

Our latest issue is a new MRI, which shows enlarged ventricles – hydrocephalus? Or not? Is it fluid replacing atrophied brain cells or excess fluid causing atrophied brain cells?

Music is still the main memory. Old music and words remain in the brain, and he can sing the words to any old song by just hearing the music. Even new songs are easily remembered. Humor is still there, and he will often say I love you, or I praise the Lord for you, – in the midst of the swearing.

After five years and the rollercoaster of heartache and hope, if you were to ask me to do the same thing again, I would again choose for him to live and for him to come home.

For me it was and remains the only possible choice.

Update November 2005: Earl began not responding as well as he had. I had been asking for a CAT scan or MRI for three years but everyone said that it would not show anything. I finally got a neuropsychiatrist to order an MRI in October 2004. The Radiologist said it was possible Hydrocephalus (for more information please see http://www.hydrocephalus.org/). The first neurosurgeon we consulted said no it wasn't, the 2nd said you couldn't tell from the film but he would put in a spinal shunt. Earl was ineligible for that because of the baclofen pump (the spinal shunt would remove the baclofen that the pump was putting in). We then contacted the Hydrocephalus Association and got the name of a doctor at Duke who specializes in Hydrocephalus. He did the nuclear dye test to ascertain that there was hydrocephalus. It turned out that it was and we had the operation May 27, 2005 at Duke by Dr Alexander to implant a shunt in the brain to relieve hydrocephalus. The shunt funnels the excess water on the brain through the digestive system. We saw some improvements by October 2005.

My Daddy by Alison Bunn (then 13)

A regular old day in Winter
turned out to be a nightmare.
Try finding out someone you love
may no longer be there.
My Mom and Dad had left to eat
about an hour before.
I heard them say goodbye
as they shut the kitchen door.
My brother and I were doing
the normal stuff kids do.
Until we got the phone call
that left us so confused.
My Mom told Greg what happened
as I listened to what she said.
Your father’s had a heart attack
her voice sounded so dead.
I ran in the room where my brother was
tears running down my cheeks.
As I looked at him for an answer
but he too looked so weak.
I never saw my brother
so shaken and so scared.
For we both stood and hugged
and felt so unprepared.
We got out of our PJ’s
and jumped into his car.
We headed to the hospital
which never seemed so far.
As we pulled into the parking lot
I saw my family outside.
By the expressions on their faces
I thought that he had died.

Thanks to God and the support from friends
we made it through the night.
The hardest thing I’ve had to do
is watch my father fight.
He was struggling so hard for air
he didn’t deserve this at all.
I never thought my Dad
would take such a hard fall.
The next four weeks he lay there
in a coma fast asleep.
As everyone just waited
and tried hard not to weep.
We waited so long for him to wake up
and after awhile he did.
But now his memory was gone
he was once again a kid.
He stayed in the hospital a couple months
and I was ready for him to come home.
Without my daddy by my side
I felt scared and alone.
After he moved from Rex to WakeMed
we noticed how lucky we were.
For we still had my father,
time was just the cure.
He still has no memory from the past
and he can’t read or write.
I’m just thankful he stayed with us
instead of following the light.
Every day I try to thank God for what he’s done.
He gave me back the best father
and my favorite man, Earl Bunn.

Blaine's Story

Blaine is a 5 year old triplet. He had acid reflux as an infant and at the age of 7 months he had an acid reflux aspiration and went into cardiopulmonary arrest for 49 minutes. We happened to be a Duke for a NICU reunion and the RT, Drs and nurses who had cared for him from birth were able to resuscitate after 49 minutes. The CODE left him with an anoxic brain injury.

Blaine is medically stable, he eats and drinks by mouth (pureed foods of course), he can't walk, talk (although he tries real hard), he can't sit or stand - he doesn't grab for things or play. He was only 7 months when this happened so he's never ever said MOMMY (or HONEY as his siblings call me).

I am desperate for help. We went to Miracle Mountain and received treatments and saw some really great things so we are in the process of purchasing a home use HBOT chamber in the next 2 months. We have $4000 more to raise but have made the deposit. I just feel like time is passing away and my little man isn't progressing real fast. We still have seizures (2 - 3 a day normally).

If you know of any resources - anywhere, please email me at wendy.philyaw@talecris.com or www.caringbridge.org/nc/blainephilyaw

Lionel Aloe

On March 6th 2002, I had a cardiac arrest thereby ending up in a coma for a few weeks. I am now unable to work and visit the mental health charity, gym etc. Headway, is too far for me to go to. If you have any advice you can contact me at lionelaloe@hotmail.com

Jeffrey Parker

My 34 year son Jeffrey was assaulted and left in his pick up truck August 27, 2004. He went into cardiac arrest and presented to the ER in cardiac arrest and 50% oxygen to his brain. Jeffrey is at home with his dad and I, and he is total care. He cannot do anything for himself. He has cortical visual impairment, and he does not speak. He is vocal, but not verbal. He has a peg tube and also a baclofen pump. We recently were able to get AFOs for his feet and dyna splints for his elbows. He has been able to eat by mouth small bites of things like mashed potatoes and gravy, pudding, applesauce, and has even (with lots of effort)sipped from a straw.

The Hyperbaric Oxygen Therapy seemed to help him cognitively and helped with his spasticity. Jeffrey likes for me to read to him and sing to him. he likes to be a part of what is going on, even though he cannot participate.

I would welcome any comments. You can contact me at: charprkr2@aol.com.

Jim O'Neill

The physicians are not sure what stopped my son's heart on March 3, 2004, but surmise that it was a combination of prescription medication and an over-the-counter cold remedy. He had to be resuscitated 3 times and we are not really sure how long he was down. We were not given much hope at the beginning and Jim remained in a coma for about 2 weeks. As he slowly came out of the coma we realized that this was not going to be a quick recovery nor would he be the same person he was before the cardiac arrest. It has been 3 1/2 years since that late night telephone call that would change all of our lives but Jim has regained a lot of his functions. He is mobile but does have significant cognitive, memory and executive skill problems. His fiance stayed with him for the first year and a half but then she decided that being a caregiver was not how she wanted to spend the rest of her life. Jim lives with his mom and dad and has a daytime caregiver. He is doing quite well and continues to improve every day. You can contact me at: ivy.oneill@power.alstom.com.

Shane

On 6/16/2006 my 39 year old husband, Shane, suffered a cardiac arrest while we were shopping at Wal-Mart. The store we were in did not have a defibrillator, so we had to wait for paramedics to arrive. The nearest I can tell, he went about 5 - 6 minutes without oxygen. A stranger started chest compressions on him, but I was in such shock that it did not even enter my thinking to lean over and breathe into his mouth.

He had one artery on the back of his heart that was 100% blocked. The surgeon inserted a stent and stated that there was no damage to his heart. The neurologist, however, did not have such promising news. After 3 days in the hospital I was told that Shane would never be anything more than a "vegetable" (by the way I HATE that term) and I needed to make a decision about terminating or prolonging his life. All this after only 3 days! After much crying I began to recall a conversation between my husband and I around the time Terri Schiavo's case was airing. After watching her suffer a horrible death of dehydration and starvation, we made a verbal commitment to each other that we would do whatever it took to keep the other one alive. I voiced the decision to Shane's doctors and they began with the procedures of inserting a trach and feeding tube.

Seven days later he was discharged to a rehabilitation facility for a maximum of 30 days. I was told that he would either rehabilitate and be discharged home or he would not get any better and be discharged to a nursing home for the remainder of his life. How generous, a whole 30 day window of opportunity! (Those of you who have experienced this, will appreciate my sarcasm here.)

Needless to say, he did not get any better and I had to start looking for a nursing home. Now, I must let you know that I have never even had a grand-parent in a nursing home, so my eyes were blinded in the beginning. I went to 5 different facilities within about a 30 minute radius of our home. I was turned down by 4 of them. Two homes would not take him because he was under the age 65; two homes turned him away based on his level of care. Wow, this didn't leave me much choice!

Shane spent the next 15 months doing a "dance" between nursing home and hospital. He aquired various infections, pneumonia, sepsis, MRSA, UTI's, respiratory failure, etc. My prayer to God became very simple; "Something has to change - please give me the knowledge and wisdom to care for Shane - show me the way". The next day I was led to some information on the importance of nutrition. I got the doctor's approval and I approached the nursing home about administering it, but I found out they were not giving it to him on the schedule prescribed by his doctor, so I just started mixing it myself and putting it in his feeding tube every evening when I went to see him. Shane's health improved almost immediately. His body was now able to fight off infections as his immune system was rebuilding itself.

I inquired about weaning Shane from the trach and we started plugging it a few minutes at a time. His reaction was completely normal, he opened his mouth and took a breath as if he had been doing it his entire life! The trach was eventually removed and it healed over nicely. I was now in a position to bring Shane home to live.

He came home on 11/30/2007. I have a caregiver that stays with him while I work. It was one of the best decisions I ever made, short of purchasing the hyperbaric oxygen chamber......yes, you read that correctly! I am a firm believer in the importance of oxygen to the body's cells, tissues and organs. I only regret that I didn't know about this wonderful technology sooner! I highly recommend the book "The Oxygen Revolution" by Dr. Paul Harch - a very easy-to-read "Hyperbarics for Dummies" type book.

Shane's first treatment was on Good Friday 2008. I started him out with 60 minutes each day and he is now up to 150 minutes every day. To date, he has had 245 treatments and I am seeing some wonderful improvements! I was able to wean him off of ALL of his prescription medications! Shane's seizure activity, heart rate, 02 levels, cholesterol levels, etc. have all normalized since he started the treatments (No meds - WOW!) Needless to say, this really impressed his doctor. He has regained his swallowing reflex - that is something that cannot be taught - it only comes back with improved brain function. He is now sleeping through the night - this is a HUGE blessing! Before, I would get up about every 2 hours to sunction him and calm him down. The amount of his secretions has been reduced dramatically since starting the treatments. He is breathing better and not as congested as he used to be. His muscle tone is completely relaxed and flexible - he is not contracted at all - and it's now been 2 1/2 years since the brain injury! A lot of people in this situation have arms and legs that are bent and contracted towards the body, but the hyperbaric oxygen allows the muscles and joints to relax. Shane has started to become more vocal - not verbal yet, but I am very hopeful. He lets us know when he is in pain or when something feels good, like when I rub his back or massage his scalp. He can now squeeze my hand and I am looking forward to the day when he can track an object with his eyes.

The human body has 3 basic needs: the proper nutrition, water and oxygen - without these you cannot live. I feel there are 2 more that need to be added to that list, God and love of family.