Brain injury is BIG.

Empowering the severely brain injured and their families via support,
understanding and a network of care.

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Stories

Simon's story

July 19th 2008. The day our lives changed forever. Simon and I had been married for 20 years. We had two sons, Ben and Josh. Ben was at university, Josh was training to be a CCTV engineer. Simon and I ran our own businesses, two of them. At 49, Simon was fit, healthy, vigorous and hard working. He was also the kindest man you could ever wish to meet and nobody had a bad word to say about him.

On the day of the accident, Simon and Josh were working together and had just arrived at the warehouse we rented to collect some equipment. Simon was standing on the back step of a van which Josh was driving, and he fell off, hitting his head hard on the concrete driveway. Josh, I know, will always blame himself, but it was just one of those stupid things that you never imagine happening to you. I can remember word for word the phone calls I got, the desperate rush to the yard, the dreadful, dreadful sight of Simon lying on the ground, surrounded by medical staff. He was groaning and thrashing around and I remember thinking that if he could do that then he would probably be alright. He was sedated and taken by air ambulance to a London hospital and transferred to the Intensive Care Unit. When Josh and I were shown in, Simon had tubes and wires everywhere and was connected to a ventilator. Nothing can ever prepare you for that sight. We were told that he had fractured his skull in three places and sustained mild to moderate brain damage. Over the following days, he had a craniectomy to allow his brain to swell, a tracheostomy to help him breathe and a peg feed inserted and he had repeated CT and MRI scans. We were finally told that in fact he had catastrophic damage to his frontal lobes and several lesions to the brain stem. If he survived he would never be able to walk or communicate and would be completely dependent on nursing care. For the moment we should discuss organ donation! Of course we didn’t believe that. This was Simon they were talking about. He was strong. He was a fighter. He would find his way back to us.

And during those first weeks, it did seem as if he might. He was able to respond by squeezing our hands, he reacted to pain, he followed sounds. But gradually he stopped doing these things and just lay quietly with his eyes closed. I would have given anything during those days just to see his big blue eyes. He battled with chest infections and colonised MRSA, but he hung on and gradually, physically at least, he stabilized. He was moved from Intensive Care to the High Dependency Unit, and a few days after that, to a ward. It was then that the real battle started for us, to try and get Simon the care that he deserved. Having gone from one on one care in the ICU, we were now faced with one nurse for every ten patients. Simon was in that hospital for over three months and never once had a bath or shower. They just didn’t have the facilities. I had to shave him otherwise it didn’t get done. There were some wonderful staff there, just not enough of them.

Eventually Simon began opening his eyes. Occasionally he would move his limbs or his head, very, very slightly. He had an enormously strong cough and we learnt to recognise when he was about to, and dodge out of the way of the secretions that were propelled from his trachie tube! He was visited and assessed by a member of the Primary Care Trust for our area and we were informed that he would go to the Royal Hospital for Neuro-Disability in Putney for further assessment and rehabilitation. I clung on to that word, rehabilitation. If they were talking about rehabilitation then surely there must be some hope for his future. He was moved to Devonshire ward at Putney in October. Because of delays with the ambulance service, we had to travel there with the sirens going and the lights flashing. Terrifying but exhilarating at the same time! He was welcomed and settled in and finally given a bath. We met teams of physiotherapists, speech and language therapists and occupational therapists. It felt as if rather than just being cared for, Simon was finally going to get the stimulation he needed to improve. Sometimes though there seemed to be too much stimulation. He had been put in a four bedded ward and at times there was a lot of noise. I found it quite intrusive and hard to deal with but the chances of getting a single room seemed remote and in the end we never did manage it. But the care was marvellous, the staff seemed to really care about Simon as a person, not just a patient. And I finally got to meet other relatives in the same situation which was such a comfort to me.

At the end of October Simon took part in some research trials at Addenbrookes hospital in Cambridge. Things didn’t go brilliantly. I noticed that his eyes were becoming really bulgy and he was vomiting a lot. Still he managed to undergo all the tests though he did throw up in a terribly expensive Functional MRI scanner! When we returned to Putney though, they were concerned that his head had become very swollen. I was told about hydrocephalus, shunts, cerebrospinal fluid, intracranial pressure. The doctor in charge of Simon requested that he be taken back to the London hospital urgently, for a shunt to be inserted to drain off the CSP but we kept being told that there wasn’t a bed, or space on the operating list. Day after day he was put off and I became more and more desperate. Especially when I discovered that during a CT scan that Simon had had at that hospital a few days after he’d actually moved to Putney, it had been discovered that there was a build up of CSP but there were no plans to do anything about it.

Eventually, Simon became so ill that he returned to the London hospital the same way he left, with sirens and lights going. It still wasn’t certain that he would be given a shunt, that decision was down to the neurosurgeon who had treated him initially. I was determined that he would get one. One of the things that I’ve learnt during this journey is that sometimes you have to fight tooth and nail to get what needs to be done. You shouldn’t have to, but you do. However determined I was though, it wasn’t going to happen immediately. Simon now had a chest infection and had to be given antibiotics, The pressure on his brain was relieved by a lumbar puncture.

The following day I attended a meeting with the care team at Putney. The doctor from Addenbrookes was there too with the results of his tests. It wasn’t good news. I was told that the frontal lobes of his brain were so damaged that there was virtually no chance that he would ever regain any of his cognitive abilities. Visual and aural pathways were reasonably intact so he could see and hear but he had no way of processing that information. And in fact, there were small areas at the front and back of the brain that had actually been removed during the craniectomy because they were so damaged. As I looked round the table I could see everyone looking uncomfortable and not meeting my eyes, and it was then that I began to be afraid that there wasn’t going to be a happy ending. But I still didn’t give up all hope. Simon might make some recovery and I was going to do everything I could to make sure he got the care he needed for that to happen.

Back at the London hospital, Simon recovered from the chest infection, but then I was told he had an infection of the CSF. More antibiotics, and a lumbar puncture every other day. It was dreadful. They told me that with the local anaesthetic he wouldn’t feel any pain, but he LOOKED as though he did. This went on for week after week, until finally on Christmas Eve he had the shunt put in. It was like an early Christmas present and the difference to his head was amazing. The bilateral depression caused by the craniectomy had returned which looked shocking but showed that the shunt was working. Despite losing our PCT funding at Putney because he had been away so long which entailed a transfer to our local hospital for eleven days, Simon finally returned to Putney in January.

Over the next few months he underwent SMART assessments and received his own wheelchair. In April 2009 he had a cranioplasty procedure to insert a plate in his skull. I cried when I saw the results because now he looked like Simon again. However, he wasn’t showing any signs of awareness. And at the second team meeting in July, I was finally advised that he was in a persistent vegetative state. No matter how I argued that he hadn’t had a fair chance at the assessments because of everything he had been through, I was told that Simon would have to move into a nursing home. It felt like we were being abandoned.

Simon was weaned off his tracheostomy and in August 2009 he moved into a nursing home in the next village to our family home. Although I still felt as though everyone had given up on him too early, in a way it was a relief. He was settled and well looked after, in a lovely room of his own with all his own belongings around him. Best of all there was no more driving fifty miles each way after work to see him, now we could just pop in and out whenever we wanted.

July 19th 2008. The day that a stupid accident robbed me of my husband, my best friend and the person who could make me laugh more than anyone else. The day that the boys lost their father, my father in law his son and my sister in law her brother. He’s still here and at the same time he’s not. It’s been such a difficult time and we’ve had to make so many adjustments. Josh has come to work for the company that Simon started. He’s doing very well. Ben has continued at university. I know their father would be so proud of them both. The financial costs have been huge but we’ve managed. I’ve kept the company going and I never thought I would be able to do that without him. I hope he would be proud of me too. Our lives go on, but in a way that I could never have imagined. I see him pretty much every day, but there is no way of knowing if he knows I’m there or not. I miss him so much. He should be here with me now, this moment. And all I can do is keep fighting for him, and hoping that maybe one day, somehow, he will find his way back to us.

UPDATE June 2012

Although Simon had been deemed to be in a persistent vegetative state, we noticed some gradual changes in his awareness and responses. He started smiling when he heard a friendly voice; his eyes would track movements now and again and he gained more movement in his hands. Eventually, we got to a point where if he was asked to raise his thumb or lift his hands he could do so. Not consistently, but enough so that when he went back to Addenbrookes for functional mri scans, clinical observations resulted in the doctors suggesting that he had emerged into a minimally conscious state. It was so nice to see these things. When he smiled it just brought joy to my heart.

Unfortunately these little changes were only in evidence when he was physically well. Like many brain injured patients, Simon suffered frequent chest infections. In October 2011, during a fairly routine operation to change his PEG tube, Simon caught pneumonia and one of his lungs collapsed. After three weeks in the high dependency unit he recovered, but his lungs were becoming seriously compromised. In March this year, he was rushed to hospital with aspirational pneumonia and we were told his condition was terminal and his life could be over within hours. Ever the fighter, Simon returned to the nursing home so that he could be amongst people who knew and cared for him, and he battled on for another two weeks. On April 6th, with his family at his side, Simon lost this fight.

Rest in peace my darling, and always remember how much you were loved.

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