Brain injury is BIG.

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

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Stewart's story

Wednesday 17th October 2007 seemed like any other chaotic morning in the Newman house. Everyone getting ready for work, saying their goodbyes and setting off on their individual journeys. Stew left for work at about 7:30am and informed me he had a meeting after work and wouldn’t need an evening meal. He was in a chirpy mood and went out singing. The next hour was very much like normal. And… then the phone call came that changed all of our lives for ever… “Hello, is that ‘mum’ this is the Bracknell Police, there has been an accident….” I knew immediately it was Stewart.

Thankfully, Scott, Stew’s youngest brother had not left for work yet and some how we managed to get to Frimley hospital. We were met by a nurse and a policeman and ushered to a side room – I can remember thinking ‘this isn’t a good sign’. However, ‘positive thinking’ is me and listened as best I could to what the doctor had to say…. “Slight bleed in brain… not able to drain because of where it is… induced coma…. ventilated….broken arm and few facial cuts.” Said they would clean him up and we could then go and see him in ‘resuss’. Frantic phone calls were then made to his eldest brother Mark and his fiancé Carly, and Matt his other brother. I had already phoned Trev, my husband and eventually we all gathered at Accident and Emergency where we were able to see Stew. Some how at this stage I still believed that Stew was going to wake when the sedation was reduced and all would be well!

They were soon to move Stew to Intensive Care … a sterile place full of tubes, monitors, wires, drips and constant bleeping. Although initially I found Intensive Care quite daunting it became clear that this was a place of calmness and control. A nurse allocated to each patient, all of whom seemed to have time to try to explain what was happening and what each sound meant. However, it wasn’t always as easy to track a consultant down or even a registrar and when we eventually did, some were more friendly and positive than others. We knew they had done a couple of scans but didn’t really know what the prognosis was and of course Stew still remained ‘asleep’. As each day went by something new would happen… Stew was constantly sweating, (storming – we were told it was called) not just little beads on his forehead but huge beads of sweat all over his body – the nurses explained that it was his temperature control in his brain not working properly. This would lead to dehydration and so we were constantly checking on how much in the way of fluids he was being given. What drugs should Stewart be on? – Trev and I had no idea, so relied upon the professionals! Apparently constant phone calls were made to St Georges Hospital to get some guidance. This was the time that the drugs Baclofen and Clonidine came into our vocabulary. I became quite paranoid about his drugs … What were they? What side effects did they have? What did they actually do? I would come home from the hospital and log onto the internet to find out all I could.
Stewart was given a Tracheostomy which seemed to make him look so much more comfortable without the massive tube in his mouth, down his throat and into his lungs.

Although the sedation was eventually reduced Stewart seemed to stay in this ‘induced’ coma. They would refer to the Glasgow Coma Scale frequently to see if Stewart’s eye, verbal and motor responses were improving. I remember hanging onto every word the nurses might say – ‘flutter of eye lids’ or the ‘twitch of a hand’. However, Stewart remained in this state for quite a few weeks. It was at this stage that one of the ‘friendlier’ consultants had a meeting with Trevor and I – it was made clear that Stew, as he was now, may be all we would actually ever get and that whatever state he was in after a year to two years would be it. (We since know that is not actually correct). He explained the problems with brain injury patients, chest infections, urine infections, not responding to anti-biotics, the possibility of not treating – it went on and on. Trev and I came out a bit dumb struck – however, with positive thinking and with the support of loving family and friends we believed it would be better than the picture painted.

After a couple of months in Intensive Care the bed Stew was in was needed urgently and it was felt that Stew was stable enough to go into a normal medical ward. This was a really difficult time for me – I was worried about so many things. One of the main issues was the number of nurses to the number of patients. It worked out that there were approximately 2 nurses and a carer looking after 16 patients. This was obviously difficult for the staff but my main concern was that Stewart would not have all his needs met. He wasn’t able to communicate or let them know if he was in pain, or if he needed changing, or if he was uncomfortable, therefore I really felt I needed to be there with him. Initially none of the staff on the ward, including his new consultant knew Stewart or his medical or recent case history so it seemed essential I was there just to be his mouth piece. Apparently his file was so thick that it would take too long to plough through it. Why the staff on the new ward can’t communicate with Intensive Care beats me!! Sadly, many mistakes were made and we had many a worrying time when his drugs weren’t given correctly or at all and his heart rate would go sky high, his blood pressure in his boots, sweating profusely and the ‘crash team’ called many a time just to be on the safe side.

Stewart was moved no less than four times during the next four months – four new wards, four new nursing teams and nearly as many consultants. On every change over it was essential I was there to make sure they understood all that had gone on with Stewart in the previous weeks and also give them details of his complicated medical history. Stewart was born with a Trachea-Oesophageal Fistula, which meant that his Trachea and Oesophagus were joined and therefore anything he swallowed went into his lungs rather than his stomach. He was put in the care of Great Ormond Street Hospital where he had a number of operations in the first 6 months of his life. His stomach was eventually pulled up through the diaphragm and situated in his chest cavity, between his lungs. This obviously caused problems during childhood but was proving to be a bigger problem now that he needed a feeding tube inserted. It was agreed that Stewart would need a jejunostomy tube. This was apparently going to be a tricky procedure as the jejunum is small and it is essential that it is inserted in exactly the correct place.

Stewart had the surgery and all seemed ok although Stew seemed quite distressed for the next couple of days. It was two days after the operation that I received a telephone call at work to say that Stewart was in a critical condition and we needed to get there as soon as possible. Once again phone calls were made and we got to Frimley very quickly. We were told that Stewart’s bowels had stopped functioning, maybe twisted, following the operation and consequently his faeces were backing up through his stomach, up his oesophogus and down into his lungs. This was all very acidic and they were very concerned as to the damage it would have done. It was also full of waste and a highly likely source of infection, possibly leading to pneumonia. They started him on a strong dose of anti-biotics and all feed and drugs were stopped. We would have to wait and see. Thankfully, Stewart, our little fighter, responded to the anti-biotics and after a couple of enema, his bowels were working again. Soon after, feeding was able to resume.

The weeks went by and it was necessary for Stewart to move to a hospital for rehabilitation. It seemed as if the decision was to be made by the local Primary Care Trust as to where he was to go. They informed me that the best place for Stewart would be the Royal Hospital for Neuro-Disability at Putney. Stewart was assessed by the PCT and then we had to wait for a bed to become available. During this time of waiting further problems arose and further worries. However, on a good note, Stewart had his trachie removed, which was a step forward but had to do all the coughing for himself, no more easy suctioning!

In April 2008 a bed became available in Devonshire Ward, RHN, Putney and Stewart was transferred by ambulance. Stewart was settled into his room and although he seemed agitated and sweaty he looked comfortable. His doctor came and spoke to us straight away and I can honestly say I learnt more about the effects of Stewart’s accident in that 10 to 15 minutes than I did in 6 months at Frimley. The staff were really kind and I felt totally at ease in leaving Stew in their care. It wasn’t long before the Physiotherapists, Speech and Language Therapists and Occupational Therapists started work with Stewart. They have a program called the SMART program (SensoryMobility Assessment and Rehabilitation Technique). This is a comprehensive assessment and treatment developed specifically for identifying awareness in vegetative state or minimally conscious state patients following a severe brain injury. They use a range of techniques to analyse behaviour and wakefulness.

We had quarterly meetings with the Putney team and PCT to discuss Stewart’s progress and also get agreement for further funding. For quite a while it was unclear about Stewart’s progress, Could he see? Was he obeying commands? Did he understand what was being said? Thankfully there was always something Stewart had done that gave hope and so further funding agreed for more therapy.

During the year he spent in Devonshire Ward Stewart had good times and bad … the bad were usually concerning his jejunostomy. He managed to pull it out in August 2008 which led to peritonitis, this was almost fatal. Once again Stewart kept fighting and after a life saving operation and time in Intensive Care at Charing Cross Hospital he returned to Devonshire Ward! He was left with a nasal jejunum tube as his jejunum was not able to withstand more surgery for a while. Stew was to be fed like this for a further 6 months and it was necessary to have his right hand enclosed in a ‘boxing glove’ to stop him pulling his tube out. This tube was more difficult to insert than the usual nasal gastric tube. The only time the glove could be removed was when we were there with him. This must have been so frustrating as at this stage Stew had started to use his right hand quite a lot. He was able to hold a pen and I was so excited when he wrote something that looked like ‘Stew’ and also played noughts and crosses. I took photos on my phone to show all at home! We would try many different ways to stimulate Stew, I would read to him, watch films with him, play music, thumb wars, throwing a tennis ball and even bring in children’s learning toys to encourage motor skills.

Another break through was at Christmas 2008 – all of us took presents in for Stewart in the morning, he seemed to know it was Christmas, took his presents out of Christmas sack and opened them on his own using his good hand and holding with his teeth. Gave us thumbs up for the ones given. His nan bought him a favourite after shave and to our amazement Stew took it out of the box and sprayed some on his neck. Not a dry eye in the room! Christmas was good that year!

In April 2009 it was felt that Stewart was improving in his awareness and communication (thumbs up for ‘yes’ and the shaking of the hand sideways for ‘no’) and that he should be moved to Drapers Ward. This was a huge step forward, this was a ward where some patients were eating, drinking, speaking, some walking and all communicating in some way. At the beginning it seemed as Stew was out of his depth. But now, a year down the line (it is now April 2010) Stewart is still in Drapers Ward, he has had his jejunostomy redone, he is communicating using a spelling chart, he mouths words and tries to speak. He has an amazing sense of humour and tells everyone he loves them using sign language. He enjoys music sessions and enjoys the art sessions. He has started to have a little pureed food at lunch time, however, Stewart does seem to have a problem with swallowing, but we will continue to persist. He comes home every weekend, (we have a hospital bed and hoist at home and have purchased a vehicle from Clarkes Mobility in Kent) he seems to love coming home but sadly because his short term memory is about 1.5 hours to 2 hours he doesn’t remember the next day. Again, we will continue to remind. We have made a picture diary for him – so all things we do are recorded in photo for him. He loves this book.

As I write we are in the process of meeting with the PCT and Social Care Manager to make decisions on what happens next but I can say that I thank all the Doctors, Nurses, Carers, Psychologists and Therapists at Putney for the wonderful care Stewart has received…. We have made some wonderful friends during Stewart’s stay and it was whilst in Devonshire Ward that I met Anne, Judy, Lois and Sue. It was lovely having such people that fully understood all we were going through. We had fun times together along with times when we needed to listen and be there for each other.

Although this might be a long story, (I’ve left loads out as well!) I hope you might take heart from it. It was felt Stewart might remain in a vegetative state but he has shown that anything can happen. No brain injury is the same and no one can say how it will turn out. I’m still looking for the next stage in his improvement and will continue to do so.

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