STEWART’S STORY – written by his mum
Lynne
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.
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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!
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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.
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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.
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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.
Contact Lynne