2003 was the worst year of my life.
My husband, a keen mountain biker, was involved in a bad fall whilst on a ride through woodland in a remote part of Aspley woods in Bow Brickhill near Milton Keynes. He sustained injuries that included a collapsed lung, head and neck injuries and later diagnosed with a compression fracture to the upper spine causing nerve damage.
Thanks to the help on the scene from his biking friend and a resident of the village that he was able to summons help from, and crucially the Thames Valley and Chiltern Air Ambulance, he has made a fantastic recovery.
Seeing him lying in Intensive Care for the first time was rather surreal. I knew it was my husband, but somehow it seemed like it was happening to someone else. He was unconscious when airlifted to MK General, and has very little recollection of his time in the unit. For the first day or so he was completely sedated to allow the swelling in his brain to settle down, but the plan was to try reducing this as soon as possible to be able to assess the extent of the head injury. The first attempt was very distressing, with him pulling out the tubes and life support equipment he was hooked up to. He was re-sedated to allow him more rest time. On the second attempt he was still very agitated and the nurses resorted to caring for him on a mattress on the floor with his hands bound in bandages to prevent him injuring himself further. I spent all night literally holding his hands still. The nurses on duty were fantastic. It was one of these wonderful ladies who suggested that I may like to keep a diary of events which I did for a while. I was amazed that for someone who had been so badly injured, he was still so strong.
It was shortly after this that I was required to sign a consent form for a tracheostomy procedure to be carried out which would allow him to be ventilated from the throat, so the big tube that had until that point been through the mouth and down the oesophagus could be removed, making it more comfortable for him as the sedation began to be further reduced.
He began to make steady progress from this point. Although still agitated there would be times when he would sleep and stop pulling at the tubes. His parents and I would speak to him all the time, although we were not sure whether he could hear us. On one particular visit though still quite early on, his father asked him to squeeze his hand once for yes twice for no in answer to questions. And he did. That was great. Although he remembers nothing of it now, it gave us hope that he was still the same person and could understand in some sense what had happened. There was a bit of a set back when he developed a chest infection causing a high temperature, but this was treated and began to improve. Suctioning off of fluid via the trachestomy tube was awful to witness, but a necessary part of the care to keep the lungs clear and prevent further infection.
As his recovery improved he was moved further down the ward. Although he was still very poorly, it felt like a significant step.
The following weeks involved the further reduction in medication and amount of ventilation to help to reduce dependency. As the machines began to be obsolete one by one, it was remarkable, the speed at which he improved. Physiotherapy was started but after it became clear that something was seriously wrong, further X-rays and scans discovered the unstable fracture in his upper spine which meant he had to lie still for weeks and only be moved by the nurses.
This set back I believe was the beginning of a deep depression that was to last the rest of his stay in hospital and eventual early self discharge.
After having spent three weeks in the unit and now off the ventilator, he was moved to the trauma ward which initially seemed like a positive step, but this is where things really took a turn for the worse. Individually the staff couldn't be faulted, but the transition from the close and personal care provided in the critical care unit and seemingly lack of understanding of the psychological effects of his case, led him to become obsessive and fixated on getting out of hospital. Physically too, he was still on bed rest, but there was confusion and disagreement between the shifts on how long this should be for and whether he could move himself. There was just not the staff levels required to assist all the patients in the ward and sometimes he would have to wait a long time to be attended to, especially at night for very basic needs.
This was when he was assessed by a nurse from Headway, the brain injury clinic based in Aylesbury at his family's request. He would be quite devious, presenting himself 'normal' to medical staff in an attempt to be allowed home. He became very introverted and anxious when we weren't around. There were stricter visiting hours too compared to the critical care unit, so he had more time to work himself up and would be very distraught when his family and I came to visit. This was very hard to cope with, and I remember thinking whatever his physical injuries are, I just hope he eventually returns to the person he was before the accident.
Six weeks had passed by this time, when one day on a visit he said he was going to walk out of the hospital. If I didn't help him he would do it himself at night and probably injure himself. If I discussed with anyone what he'd asked, he would never forgive me. The preceding weeks had been very stressful and seeing just how unhappy he had become, against my better judgment, I helped him with the aid of his walking frame to the car and took him home.
All the way home all I could think was "what have I done?". By then though it was too late. Eventually, somehow, as he was still very weak from being immobile for so long, we made it home, upstairs and into bed where I cared for him. I feel I must have gone a bit insane myself at that time because that is when the consequences of what I'd helped him to do, really became apparent to me. I couldn't sleep, afraid that something would happen to him in my care, and he had no medication. The following day I spent time on the phone to my GP surgery struggling to convince them that I needed a home visit. One of the doctors, not our own, called later that day and was absolutely fantastic. In the course of the following weeks she called frequently to check on his progress. I was contacted by the physiotherapy department at the hospital who had had a spine brace made for him that he was to wear whenever he was out of bed. The community occupational therapy unit came and fitted disabled aids to the bath, toilet etc and taught him how to manage stairs for an outpatients appointment he was due to attend. This terrified him, as he felt sure that it was a ploy to get him back to hospital.
Everything he did physically was of great effort and he would spend a lot of time resting. He was still very afraid, and I couldn't really appreciate what he was feeling, but later discovered it was fear of having lost several weeks of his life and a feeling of unreality to his existence. Thankfully, in a psychological sense, his return home enabled him gradually the security and familiarity to come to terms with his trauma. The head injury nurse visited him at home and was a great help in encouraging him to try things again that he'd been interested in before the accident.
As his physical and mental condition improved, he was more willing to have people outside the immediate family visit him. It was of great help to me in having a very understanding employer in allowing me the time to stay home to look after him and family that were supportive. Gradually and with the help of his own understanding manager, he began back at work, very gently at first after a few months. This gave him a focus and social interaction needed to help build the threads of his life again.
I would say though it was a good year before he really began to get back to the person I knew with a lot of ups and downs along the way. The loss of my father six months after the accident also made it a doubly difficult time for me, but I was so proud of the support and understanding he gave me, and he attended the funeral with me. Due to his character and determination I feel that he made a quick progress in the scheme of things, but would have appreciated a group like ICUsteps where I could go and find people who really understood.