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March 1996 The day our whole life changed.
Sylvie and Lee's story.
March 1996 my son Lee was in a car accident not a mile from my home. I remember that night as if it was yesterday.
I had gone to bed earlier that day with an upset stomach, Lee had his own flat just down the road from me. He had just finished a relationship with his girlfriend and was just getting over it. Lee came in my room that night at seven thirty. He was going to play pool. He left his car in my drive.
As Lee was walking out of my room that night I had a strange feeling about him but I brushed it off and got stuck in a book I was reading. At eleven o’clock I heard sirens and thought they were pretty close. My stomach turned over. I tried hard to concentrate on my book but couldn’t.
I heard a loud banging on my front door... the kind of banging that tells you something is wrong. I rushed downstairs and as I opened the door a young girl I knew well fell in, she was covered in blood. She told me, half screaming that Lee had been in an accident around the corner from my home. I remember phoning my daughter Andrea and my ex husband. By the time I got out to the car park, Andrea was pulling in. We got into Lee's dads car. When we reached the scene of the accident I could see a car upside down against a wall. There was a boy on the floor, on a closer look, I could see it was not Lee. Lee was in the ambulance he had already been cut out of the car.
We were told to follow the ambulance to the hospital. We raced to our car. We lost sight of the ambulance but on arriving at the hospital a nurse was waiting for us. We were taken in to a little room, after a few seconds a doctor came in. He was straight to the point, he said Lee was critical, they could operate but he doubted Lee would live six hours. We agreed on the operation to take place; they were flying a doctor from Cardiff, Dr Tim Buxton, who would perform the operation. A lovely nursing sister introduced herself and took us upstairs to a different room near the theatre. We were given a telephone with an outside line to notify other family members. I remember looking at Andrea and thinking "nothing in our life will ever be the same again".
Lee was in the theatre five hours. We were taken down to intensive care to a little side room as the sister explained Lee would be passing up the corridor and they did not want us to see him until he was cleaned up. Soon the sister from intensive care came to introduce herself . She took us to a little office to meet Dr Tim Buxton. He told us "Lee was unconscious on arrival having a Glasgow coma scale of 4. There was a depressed left parietal fracture and there were fractures of the left zygoma, 'left maxilla', left petrous temporal bone and left clavicle". An initial CT scan showed a right frontal-parietal sub-dural hematoma with edema and mid line shift and he didn't think Lee would last twenty four hours.
Dr Buxton may be a brilliant surgeon but his bed side manner needed improvement. I wanted to say "I needed a bloody degree to understand that lot". We were taken in to I C U to see Lee, nothing could have prepared me for what I saw. Lees head was shaved and twice its normal size, there were tubes and wires everywhere. I knew only the life support machine was keeping Lee alive. I touched his hand and it was so cold, I leaned over and whispered to Lee, "son I am here, you wont ever be on your own". I went out to the little garden with Andrea and we held each other and sobbed'. Lee remained on the life support for three weeks. When he was taken off, Lee was breathing on his own. He was then weaned off the paralyzing drug. I waited for two days for Lee to wake but he never did. I was told Lee was in a coma. I went back out the garden to cry. I kept repeating "no this is not fair'. Lee remained in intensive care for three months. I asked that Lee be sent to a head injury unit in Bath Bristol. After a five month stay I was told Lee was in a vegetative state.
Lee came home to Clydach War Memorial Hospital. After some months there, I asked for Lee to go to Putney in London where he stayed for four months, still the same. I was told Lee was still vegetative. Lee came back to Morriston Hospital. I was told the next move they intended, Lee was going to be placed in a nursing home. I knew in my heart that was not going to happen I would have Lee home with a twenty four hour care team I found. I had to fight to have my own son home, but I won and over two years after the accident, Lee returned home May 1998. I have had Lee home for just over a year and I have had my property adapted to suit Lee's needs. It has been a lot of hard work, but very rewarding. Lee loved music so we have plenty of music around the house. I have six caregivers, who are doing a very good job with Lee. I have a physio Erwin Van Hooy Doonk, Erwin is Dutch, he has worked wonders with Lee. They gave up on Lee in the hospital with physio. If you cant do a back flip you have had it. Erwin understands Lee, he can read Lee.
I have a case manageress Gwyneth Steddy who has recently told me that before she worked for me I was called "The difficult Mrs. Bennett", we laughed over this one, yes I cam difficult, what Mum wouldn't be? If you fight for your loved one, you are difficult? Then so be it. Lee went back in to hospital this year to be assessed, I have recently had the report. I found lee came out of the coma after two years; I thought then why has he not spoken or done something? Then I though that Lee has locked in syndrome, I knew by Lees eyes that he was aware.
I find now that the hurt and pain is worse. When Lee knew nothing was it better for him? To be trapped in his body must be terrible, every Mums nightmare. Lee has been in a few TV documentaries radio programes. I will be reaching the four year mark next March. At the start I was told by a councilor there were four stages for us to go through' the first stage denial, the second anger and frustration, the third depression and the fourth acceptance. Well I got through the first three but there is no way on this earth I will be getting through the fourth. Accept this? If I did, I would be giving up and I am never going to give up on Lee. They expect us to accept, so we can move on with our lives. How can I move on while Lee needs me. I am very active helping other families with getting their loved ones home. The past year I have met many friends on the net who have been very supportive. I would like to thank them all: Celtic Annie, TBI Mom, Tammy, Gloria, Etta, and Ron.
I have written a book called "THIS BIG HUSH" and should be in the shops March. I want to thank Andrea who has suffered so much but has never given up. Lee must be very proud of you Andrea and I love you. Jayne director week in week out, thanks for your kindness. R E M, for allowing us to use (everybody hurts) for the TV documentary, UB40, for the wonderful tape they did for Lee. Vicky, Lees nursing sister who became my friend. Dr Wanni for giving me back my son, Ruth Lloyd who was always understanding and very straight to the point, and for all the sloppy kisses she gave Lee. Ystrad school for there lovely letters to Lee, Erwin for treating Lee as an human being, Lees care team, you have all done an excellent job under difficult circumstances.
We love you all. My message to any one going down this just remember doctors are not always right, trust your own judgment. I hope your loved ones wake up with no brain injury to complicate their lives. Me, I am going on, and we are going to make it. There ain’t no mountain too high for me to climb and when I reach the top I will stake a flag for Lee and all other coma patients. -The "difficult Mrs. Bennett", Sylvie.
Updates to Lee's Story
It has taken me over four years
to do this update so Easter Sunday 2003 I decided to update, it has been a
very hard four year's frustrating to say the least, I have often been
reduced to tears and often been in hysterics laughing at some of Lee's
antics.
I tried very hard to convince the right people that Lee could eat but
whenever a test came around Lee would refuse to eat, the last test he had
was six week's ago Lisa the dietician was coming to the house so I spent
the morning telling Lee about the test and why it was so important that he
did well, he must have understood because Lisa was really impressed with
him and gave me a diet of soups puddings and drinks that I had to thicken
so that was a big step forward for Lee.
Every doctor had said that Lee could not understand the spoken word but he
proved them wrong, one day a doctor Leslie Murphy called to asses Lee I
asked Lee to remove the cotton wool from his ear and he did it the doctor
was really shocked at this, the problem is when you ask Lee to do
something he does it five minutes later everything is delayed.
Lee now laughs aloud call's mum but never utters any other words, he nods
for yes and rolls his eye's upwards for no, I was never sure how much Lee
really knew until my grandson Warren died aged 16 march 2002, I had Warren
brought to my home until the funeral Warren had played a big part with
Lee's stimulation programe, Andrea thought Lee should pay his last
respects to Warren just like everyone else my son Tarak took Lee in his
wheelchair to Warren's room he gently lifted Lee so he could see Warren,
Lee focused on Warren and let out an howl like a wolf he was shaking the
coffin it was a dreadful moment for us all we had to drag Lee away, I knew
then Lee was aware Warren had left us.
Lee has a quality of life now he loves going to the garden centers and he
loves to get an hug, Lee cannot walk or talk in fact he can do very little
but he can show love and happiness and I am so glad I never gave up on
him, I feel Lee will go on to do a lot more, it means you have to go over
one thing at least ten times ten times a day and it is so rewarding when
out of the blue Lee will do that one thing, I am blessed in so many ways I
have a supportive family who devote a lot of time to Lee and I have many
supportive friends on the net, I have faced many tragedies in my life but
I never give up and if you have a loved one who has suffered a brain
injury please hang on in there the brain takes a long time to heal, god
bless you all, hugs
Sylvie.
I live in Wales UK. Lee was assessed by Bryon Jennett who did the Glasgow coma scale. He told me Lee was PVS, blind, deaf and he would never come on. When he visited my home a year later, Lee was standing by his physio bed. Jennett said, "Lee I was wrong and I am glad to be proven wrong." Those were words I had been longing to hear. I had an ongoing insurance claim running for Lee but people like Jennett were talking about life expectancy and they were giving Lee ten years from the time of the accident. I contacted Dr. David Strauss from your country who has studied the statistics of life expectancy on people like Lee and got twenty to twenty five years. That meant my claim was higher and Lee would remain at home long after I have left.
Well sir thank you for having a
site of hope for people who are just going down the long road of a loved
one with a brain injury. God bless you.
Sylvie (posted 2-8-04)