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That morning he’d got up, had his
breakfast, and come upstairs to get ready for school munching a
piece of chocolate he had found which his Mum had left on the arm of
the sofa the night before. This I think had started the argument
with Abigail, as there was only one piece and Jack had eaten it
without a thought of sharing – typical six year old boy!
I was working at home that day.
The Sunday before I had completed the British Heart Foundation
London to Brighton Charity Cycle Ride, and thought it appropriate
for my body to have a rest for a few days after. My being at
home was to be a blessing with all that followed.
At 11:30am I got a call from Tracey who
was very upset, saying that she had received a call from Hampton
Lucy Primary School and that Jack was being taken to hospital in an
air ambulance. At this time there were no more details available -
all the school had told her was that Jack had collapsed and that
they were taking him to Warwick Accident and Emergency. This was
later changed to Walsgrave, Coventry. |
Jack Wright, on holiday 2 months before
his heart attack |
Tracey had been working in Leamington Spa that
morning and had gone straight to Warwick only to be told that the plans had
changed and that it had been decided that Jack would be taken to Coventry –
she made her way there on her own. Looking back I don’t know how she
managed it, as she was extremely distressed.
We have visited A&E with Abigail numerous times,
so at first I was relatively calm and thought that the school were being
over protective in having Jack air lifted to hospital. I expected him to
have broken something falling off the play area, as he collapsed at 11:14am
– the last minute of school break time. I locked our house and left keys
with our neighbours so they could let our elderly golden retriever out -
explaining what was happening, still fairly calm at this time.
With the news that Jack was still at the school
I decided to try to see him before they left for the hospital. From
our home in Kineton to Coventry I was going to virtually pass the school
door, and thought seeing him would both reassure Jack and ease my concern.
On arrival at the school I ran to the rear of the buildings where the air
ambulance was parked on the sports field. One of school assistants showed
me where to go – she was crying. Only when I saw the helicopter did the
reality and seriousness of the situation hit me.
The crew were fabulous, encouraging me to talk
to Jack and let him know I was there. Jack lay motionless, very pale with a
grey tinge to his skin. He looked so small, so frail and most importantly
to me he didn’t show any sign of moving or responding to my voice. It was
clear he was very ill, and my thoughts turned to his need to be in hospital
quickly. I asked that they go as quickly as possible to Walsgrave and that
I would meet him there. As the helicopter took off I was on the phone to
Tracey explaining that I had seen him, and contacting Tracey’s parents as it
was obvious Tracey was going to need their support.
The Police took me to Coventry. The prospect of
driving after the shock must have been apparent and their kindness was much
appreciated. For the first time I got an understanding of how slow people
react to the sound of a siren – all the way all I could think of was "get
out of the way!"
Tracey was waiting for Jack at the Walsgrave.
She commented on how scruffy he looked as he emerged from the ambulance -
his shirt grubby and too small (last clean one in the drawer that day),
trousers a little too long, and shoes needing a good clean as did his finger
nails. Its funny the things you notice at a time like that, but it made her
feel pleased that he had obviously had a chance to play and have some fun.
We were later told that he had been having a good time and was running
around the playground with his friends when he just stopped and put his
hands against a wall for support and collapsed - fell to the floor right in
front of his best friend. Some children went for help as Jack “would not
wake up” and from that point started the amazing effort to bring him back to
us.
By the time I arrived at the hospital Jack was
surrounded by medical staff. He was being manually ventilated and at one
point I counted 22 people attending him. At this stage nobody knew why he
had collapsed so everyone was involved in the diagnosis.
After a chest x-ray it became apparent that
Jack’s heart was enlarged and discussions ensued about what should happen
next. Time seemed to stand still but when I looked at my watch hours had
passed seemingly unnoticed. It is strange, but we have come to realise
with great surprise how true this is in hospitals when you would expect time
to drag!
The decision was taken to contact Glenfield
Hospital, Leicester, as they have extensive experience with children with
heart problems. A retrieval team was requested and preparations were made
to transfer Jack.
Upon arrival, the retrieval team busied
themselves examining Jack. Pete Berry introduced himself to Tracey and I as
the Team Intensivist and said he would like to talk to us somewhere
quieter. A room was provided, and Pete explained what had happened to
Jack. His heart had become enlarged due to a condition called Hypertrophic
Obstructive Cardioyomyopathy or as it is knows in medical circles HOCM. The
walls of the heart become too thick, affecting the electrical conductivity
required to allow the heart to pump properly. The result was an arrhythmia
or irregular beat culminating in a heart attack. Pete praised the efforts
of the people at Jack’s school, stating that most children do not survive
such an attack and added that their swift actions in administering CPR along
with the fantastic response of the air ambulance had undoubtedly saved
Jack’s life.
He went on to say that Jack was still very
poorly and that his chances of survival were very poor and that we should
prepare ourselves for the worst. Pete also warned us of a possible hypoxic
brain injury due to Jack’s heart having stopped – this passed us by largely
at this stage but was to play a much bigger part later in Jack’s condition.
All I remember of this in detail was Tracey
saying; “he can’t die”.
I signed his transfer papers after Pete warned
us of all the risks attached to moving him – there was no choice, he needed
the care at Glenfield and there was no option of him staying at Walsgrave.
The journey to Glenfield was very distressing as
Tracey and I contemplated the loss of our little boy, the same boy who only
hours earlier had made us laugh and made us cross with his mischievous
behaviour.
On arrival at the Glenfield we searched
frantically looking for the PICU (paediatric intensive care unit). Pete and
the team greeted us with reassuring smiles that all had gone well with the
transfer and Jack was stable. Huge relief, several hours had passed and
other than the ventilation Jack was coping on his own with no further issues
with his heart. The ventilator we were told at the Walsgrave was supporting
his breathing rather than breathing for him to alleviate any further strain
on his heart.
Pete wanted to talk to us again along with a
cardiology consultant – we feared the worse naturally. A more thorough
explanation of Jack’s condition this time with conversation about the likely
cause - genetic or virus induced. Tracey, Abigail and I were to be screened
immediately to rule out problems for us. Amazingly the consultant started
talking about Jack’s future and that when Jack has children they would need
to be screened as the condition was likely to be passed on. At this point
Tracey commented her surprise and asked him to clarify that he was now
saying that Jack had a future - only a few hours earlier we were looking at
a life for our family that may not have included Jack! Now we were
offered signs of hope. This was to be the beginning of the emotional roller
coaster – highs and lows of proportions I cannot describe.
He spent eight days in intensive care, with 24
hour care from nurses dedicated to him, working 12 hour shifts (and how
dedicated they were). They spent most of their time sat at the end of
his bed monitoring him and the machines he was hooked up to, writing down
seemingly continuously the details they gave, as well as being bombarded
with hundreds of questions from us and our family. They were great too in
caring for and keeping us amused, entertaining our daughter, and finding
ingenious ways to hang the ever increasing number of cards that kept coming
over and around his bed. They even put up with his mum sleeping in a
chair at night by his bed, until one of them very kindly moved her to a
little room with a fold out bed so at least they got her out from under
their feet, whilst I tried to sleep in a room a short distance away.
He looked so lovely and peaceful except for all
the wires and tubes surrounding him. He also looked so out of place -
the other patients he had for company were very poorly babies. We wondered
whether we were luckier - we’d had Jack in our lives for over six years,
whereas for these other parents it was hours, days or months. We had
been privileged to watch him grow and turn into such an amazing little
person - or was that worse? We were not sure.
The day after his
cardiac arrest, Tracey, Abigail and I were screened for this genetic defect
and given the all clear. We also met with the surgeon who could fit an ICD
and pacemaker on the next day to monitor and control Jack’s heart rate. If
his heart went into a life threatening irregular arrhythmia again and failed
to function, the ICD would shock it back into sync again. However, this did
not happen as he would not be available, and provisions would be made for
Monday.
We were also told that they would be weaning
Jack off the medication that was keeping him sedated and paralysed to see
how he would react. We were told we were looking for him to wake up
and pull at the tubes up his nose. We waited for this all day, still reading
Horrid Henry stories, audio books, songs, singing etc. just looking for any
sign. It came just before eight that evening. I had left the ward only
minutes before, leaving Tracey with one of our friends. Jack was listening
to songs on an iPod, only seconds into Barry White’s "My First, My Last, My
Everything" - a song sung many times in the car (Tracey’s choice not mine) -
it came. Not the ‘appropriate response’ we had wanted, but the sort we
didn’t want. Jack’s eyes disappeared into the top of his head, his back
arched so severely that it lifted him out of bed, Doctors and nurses were
there in seconds and once again he was sedated. A CT scan was arranged and
within twenty minutes he was being taken down to assess what damage there
was to his brain. We waited for what seemed to be an age to be told that
they could not see any obvious signs but would need to do an EEG to find out
if his seizure was epileptic, or a one off and a more detailed MRI that
would give us a better idea of what we were dealing with. The EEG showed no
signs of seizures which was good news. We just had to get through the
weekend.
We kept our vigil at his bedside, with numerous
visitors, watching and listening to the endless bleeps and alarms of the
monitors. The lows - Jack’s heart rate going sky high and very low, the
monitor even flashed 0 one morning, it’s alarm sounded very loudly and staff
came from every where. One nurse (she was the nurse who had waited way
past the end of her shift for the CT scan results, sometimes even hardened
staff can be affected) even flung herself onto his bed ready to give CPR.
We just watched dumbfounded, then Jack’s heart kicked back in seconds later
and back to normal, and probably not for the first time.
Jack was transferred from the security of PICU
to a room on a general ward, but with no dedicated nurse, just a very
paranoid and over anxious Mum. They were still lovely and just as kind, it
was just hard to get used to. It was here we were given the most unwelcome
and grave news that the results of Jack’s MRI were not just localised to one
area of his brain as originally thought, but we were told it was global and
that once again his outlook was very poor indeed and we should prepare
ourselves once again. We’ve been there before and he got through it, we just
hoped he would do it again. We were told we would need to be transferred to
the Leicester Royal Infirmary where they have a Neurological Rehabilitation
ward. That was a whole different ball game.
It was actually a ward with children and babies
with anything from epilepsy, asthma, reflux, viruses and all manner of
things. Again we met more dedicated wonderful staff, with tales of hope of
a couple of other children who had made recoveries of varying degrees. We
knew that Jack was not a run of the mill case for them, and here shortfalls,
inefficiencies and incompetences were all too familiar and were highlighted.
We know that the NHS has budget constraints, and our own private health
cover was not going to be of any use as they don’t have paediatric
rehabilitation facilities. The NHS is adequate as far as they were
concerned, but had he been 18 they may have been of some use. How wrong
they were. Despite best efforts of therapy staff, Jack was having
major problems, primarily due to not being able to position him and support
his body that had no control over itself - except for the stiffness or
‘tone’ as it is called, that distorted his body daily, leaving problems that
can no longer be put right, no matter how many pillows, rolled up sheets and
towels. We even used his teddies to jam by the side of his head for
support and to put in his hands to avoid his nails digging into the skin and
to try to relieve the fists that his hands were permanently making as they
had nothing else.
The most frustrating thing of all was that we
did not even have a wheel chair to move him around, just to be able to get
him off his bed and sitting up (Jack still can’t sit up at 90 degrees 7
months on, despite hours of physio). The summer of 2006 was one of the
hottest we’ve had for a long time, and I think for Jack’s 10 weeks stay in
hospital we were able to take him out for short times for the last month of
his stay in a ‘day chair’, that took 3 people to steer. It was not
designed for outside use – the nurses and OT staff had to turn a blind eye
as it was not really suitable, but we had nothing else and I don’t think
they wanted to question an already angry mother.
During Jack’s last 2 weeks in Leicester, quite
by chance after nagging, chasing and then quite by mistake through a
conversation with a therapist at the Children’s Trust in Tadworth, Tracey
got the number of the one person who has probably gone out of his way,
bucked and played the system, to get an old unused chair that met Jack’s
immediate need to at last be sat up at last not slumped, and be able to go
outside easily especially by his sister. Incidentally, he worked for the
very department that Tracey had asked the OT team to get in touch with
almost two months ago to sort a chair in our own area of Warwickshire!!!
Some system.
One thing that became apparent early in July was
that Jack was not getting access to the right facilities that they seem to
have in Birmingham and Oxford, we were even given the possibility of looking
at moving Jack to another hospital where facilities were better and they
were used to seeing lots of children like Jack. We could not even get
Jack’s consultant's stand-in to speak to one of the consultants there,
despite his secretary freeing up time, they just kept telling us that he was
in the best possible place. Every week something would happen or not happen
that would remind us that this was not the case, and again Tracey would
hound the consultant and his registrar. They did finally concede that
things should have been better, and they should have some basic equipment
and that this would be rectified, too late for Jack but hopefully someone
else’s child would benefit.
The only glimmer on our horizon, was the ray of
hope our consultant had told us of on our first day at the LRI - The
Children’s Trust in Tadworth, Surrey, where they have a rehabilitation
centre for children with Acquired Brain Injuries (ABI). This was our
goal and we would at least try to move heaven and earth to get him
there. Again we came up against the bureaucratic red tape of the NHS, and
the frustration of inadequacies and the inefficiencies of things not being
done because someone is on holiday for a couple of weeks, whilst our little
boy was in great discomfort and distress
The NHS is an amazing organisation - when he
needed it to save his life it was un-faulting, everything possible was done
and seemingly no expense spared. It has its faults too - the
frustration of not having simple basic equipment to aid Jack’s recuperation,
which in the end has caused other complications, short sighted and
unnecessarily as we kept pointing out, but that is another story in itself.
Jack did eventually get to the Children’s Trust,
in record time according to his consultant. I am convinced it was just to
get rid of his Mum and her constant nagging, and at the time of writing that
is where he is today, making the slow but good progress that we could only
have hoped for. He has started coming home at weekends and spent over a week
at home for Christmas. We are getting there, Tracey says it’s like
having a new born and just getting the household up and ready takes all
morning.
We have met so many amazing people here, not
just the staff but the children too and their families. It has become
our second home, and we have realised something that we never thought we
would say about our situation, we are lucky - ours is not the saddest tale
on the ward but one of hope and we are so lucky that we still have Jack.
It is without doubt that we owe so much to the
love and dedication and abilities of the staff and a parent at his school
(an ex-nurse who had turned up early to collect her own child!), the Air
Ambulance crew who were available and able to reach him so quickly and do
what was necessary (we were amazed to find out that they are a charity and
receive no support from the government), and the hundreds of skilled medical
and rehabilitation staff that have met and cared for our little beautiful
boy.
Now it is up to Jack to prove the professionals
wrong, he always was a stubborn little chap so hopefully this will stand him
in good stead. No matter how long is takes, we have time, we also have the
love and support of our family and friends, but best of all we still have
Jack and his wonderful big sister Abigail, who has been an amazing tower or
strength and help to us. She has kept us going and reminded us that we
still needed to function as a family. Some days are better than
others, some days it’s hard to get out of bed, but now Jack gives us smiles
and with them lots of hope of what could still happen.
Ian Wright
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