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

Stories

Simon’s Story by Judy

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 was working with our son Josh, when he fell from a moving van, hitting his head hard on a concrete driveway. I can remember word for word the phone calls I got, the desperate rush to the yard, the dreadful sight of Simon lying on the ground, surrounded by medical staff. 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. 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. 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. 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 care and stimulation he needed to improve. 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 Addenbrookeshospital in Cambridge. Things didn’t go brilliantly. I noticed that his eyes were becoming really bulgy and he was vomiting a lot. When we returned to Putney 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 CSF 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. Eventually, Simon became so ill that he was returned to the London hospital by emergency ambulance.On top of his hydrocephalus he now had a chest infection and had to have anti biotics. 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 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. He was still there and at the same time he wasn’t. Our lives went on, but in a way that I could never have imagined. I saw him pretty much every day, but there was no way of knowing if he knew I was there or not. I missed him so much and all I could do was keep fighting for him, and hoping that maybe one day, somehow, he would find his way back to us.

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 2012, 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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