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Alex Simpson

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									                                    Alex Simpson
Those of you with young children will know that at about 26 weeks old they may well be
teething, they will be in obvious discomfort and consequently irritable.

Friday 15th Throughout the week previously Alex had been poorly nothing seriously wrong
with him no Rash/stiffness/light intolerance one would associate with Meningitis or one of the
other scary baby illnesses he just had a slight temperature and was grumpy we had spoken to
his GP who had checked his heart lungs blood pressure which were all fine. At about 9am we
came to change Alex and found his chest to be covered in a rash, smallish red marks (about
7mm in diameter). We contacted the doctor and got an appointment for 12.30 he ate that
morning and was still drinking. The doctors examined the rash and thought it most likely to be
measles, which whilst uncomfortable is not in most cases a killer.

We live in a remote area and had missed the courier which takes samples for tests that day, so
arranged to re-visit on Monday and take samples for analysis. Our GP gave us his home
telephone number and arranged to call and see us over the weekend (even though they contract
out the out of hour’s service). Alex continued to be uncomfortable which you’d expect from a
Virus such as Measles he gave up eating and seemed to have a sore throat he would only drink
chilled drinks. Throughout the evening he was still obviously unwell but at about midnight he
had deteriorated his breathing became laboured and he was grunting we called out the out of
hours doctor service Devon Doctors where we spoke to the on-call doctor we described the
symptoms and he could hear Alex breathing over the phone he suggested we come directly to
their office in the Hospital at Barnstaple which took us about 45mins (it’s 30miles and we had
to wake and dress our other son first) on arrival we carried Alex in the doctor examined him for
about 5mins decided he was very unhappy with him wasn’t sure what was wrong possibly
appendicitis or peritonitis and admitted us directly to the Paediatric ward at the hospital on
arrival Alex was examined by the doctor on duty who together with the nurses present
immediately began to treat Alex for shock injecting him with antibiotics and fluids (although
they still didn’t know what was wrong with him the rash which was worsening wasn’t behaving
like Meningitis or Measles the consultant was called from the Intensive Care Unit had been
called into work, and the anaesthetist from ICU was also working on Alex. Meanwhile Deb & I
were in blind panic but trying to support our other 9yr old who’d come with us and was being
cared for by other nurses on the ward. The treatment continued until about 3am when we were
told Alex was to be transferred to the Paediatric Intensive Care Unit PICU at The Royal Bristol
Children’s Hospital (serves the whole Southwest Gloss, Wilts, Somerset , Devon, Cornwall )
and that they would be sending a team out to collect him. Deb & I are now beside ourselves.

                                        www.shebbearvillage.co.uk
We needed to organise our lives for an urgent transfer to Bristol which meant clothes money
and what were we to do with Jack for an unknown amount of time. Deb stayed with Alex whilst
I sped off to sort the admin. We were advised it would be best if our other son didn’t come with
us to Bristol . Because it wasn’t known what was wrong with Alex but that it could be
contagious Jack shouldn’t go to a house without children. I phoned a friend from work Ring
Ring

“Hello”

“It’s Dave, are you home this weekend”

“Yeah”

“Can Jack come and stay for a couple of days”

“Of course, when are you coming?”

“About 20 minutes”

“OK mate, what time is it”

“4.30am”

“OK see you in 20 minutes”

Twenty minutes later we arrived at their home, only then did he even ask why I’d phoned up at
4am to deliver my son to him.

I drove back to the hospital arriving about 5.45am Deb was by this time in an anti room to the
ICU drinking coffee and climbing the walls, she told me the doctors said they’d stabilised Alex
and were waiting the transport from Bristol we were expecting an Ambulance with Paramedic
& Technician. About 6.30am a Paramedic, Drugs Administering Nurse, Registrar (doctor) and
consultant from the paediatric unit arrived having blue lighted it from Bristol with boxes and
boxes of kit. They went into ICU to take over the care of Alex we went into the unit and were
sat outside his room when they went to work there wasn’t room in the room for us (for which
we are now grateful) and we didn’t want to distract them panicking whilst they were working
on him. It was explained they need to transfer Alex onto their portable life support equipment
(he now had machines breathing for him and pipes and monitors all over him) there then
followed a frantic hour, during which they had to place him onto drugs to knock him out, other
drugs to relax his muscles and other drugs to stimulate certain muscles to work during this

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transfer. Alex was no longer breathing for himself (nor for several days afterwards), his blood
pressure dropped through the floor and his heart stopped we now know but was kept alive by
chest compressions administered by the team from Bristol (no mean feat on a 27 week old
baby). Throughout this various members of staff from Bristol & Barnstaple updated Deb & I on
Alex condition he was very very poorly, we could see people running backwards and forwards
with drugs and various pieces of equipment. We sat outside the cubicle cried and prayed during
I vowed that time that if he lived I’d do something for charity every year to support the people
who’d saved him. Finally at about 9am they had him stabilised enough to travel and he was
wheeled out on a stretcher we each gave him a kiss and went out to our own car, we had been
offered a lift to Bristol in the car the team travelled down in they were going back in an
Ambulance and there was no spare space for us.

So we set off it’s now

Saturday 16th 9am we left for Bristol on route we were passed by our son in an ambulance on
blues and two’s so we knew he must still be alive. We arrived at the hospital at about noon.
Feeling shattered Alex was now in he PICU (Paediatric Intensive Care Unit) Bristol one of only
12 such units in the country so he couldn’t be in a better place. The team there worked to
stabilise him but it was touch and go for a long long time they had to keep Alex in a coma
whilst they tried to treat whatever was wrong with him. Meningitis, Measles or something else
the Paediatric Dr at Barnstaple had taken a sample of blood from Alex soon after we arrived
and it had been sent to grow a culture from whatever was in it but that takes around 48hours it
was now Saturday afternoon they wouldn’t expect to know what was wrong with him until
sometime Monday. They continued to maintain Alex life with a fantastic number of drugs
administered through a device called a Syringe Driver he also had a ventilator breathing for
him. They now had monitors linked to his chest, needles into the arteries in both legs, and
various other points of his body, a pipe into his stomach so they could feed him. The big
problems during the Saturday was getting the levels correct as his blood pressure and
temperature were all over the place, his blood pressure had fallen through the floor so he was
receiving huge amounts of fluids just so his system could continue to operate. Every action of
the staff had a knock on effect which also had to be managed, they administer one drug which
stops something else working, so they address that which causes a problem somewhere else.
The human body we now know is very finely balanced and in order to keep him alive they had
interfered with that balance so now had to control his every function. The were administering
general antibiotics but still don’t know what’s actually wrong even if it is a bacteria of some
sort (eg. Meningitis) and if it turns out to be a Virus the antibiotics won’t cause a problem. His
trunk was overheating whilst his extremities were cold so the staff were trying to

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simultaneously warm his hands and cool his body. This rollercoaster continued throughout
Saturday and overnight into Sunday (we crashed on a sofa bed in a side room for a couple of
hours).




Sunday 17th Alex’s 28 weeks birthday – at about 7am after having been stable all night he
suddenly went into decline again, blood pressure fell, heart rate up, temperature out of control –
again there is a team of PICU staff worked just to keep Alex alive. He was again stabilised and
receiving what the consultants call lots of support what they mean is about 15 separate pieces of
equipment all doing something or administering something which together kept Alex alive. The
commitment of the team is amazing the night shift who had been at work since 7.30pm stayed
at working until 9am the following day to assist the day shift. This continued throughout
Sunday but the rash developed further as well as the original dots which now covered his whole
body he now had purple blotches and pustules but still it didn’t present as anything obvious
didn’t look like either Measles or Meningitis Alex was still and had been throughout treated
with antibiotics on the premise that it may well be bacterial but if it turned out to be Viral the
Antibiotics wouldn’t hurt him. He was moved into a cubicle from the main ward as they didn’t
know what was wrong with him but it might be contagious and needed to prevent his infecting
anyone else. On Sunday evening we were told that the original blood sample taken on Saturday
am had grown a culture which appeared to be a Streptococcal A (they’re what causes a sore
throat) so they would add an antibiotic to treat that but it didn’t account for the rash or the rest
of Alex’s condition and the sample was only partially grown so full details of it weren’t yet
known.

We discovered later that his chances of survival had been assessed as a low single figure
percentage.




                                         www.shebbearvillage.co.uk
Monday 18th Alex was still sedated into a Coma attached to a vast array of equipment and we
still didn’t know what was wrong with him we’d slept on the Sofa bed again (although we’d
spent most of our time at his bed-side) the treatment continued through Monday by which time
we were hanging and I’d guess didn’t smell so good we’d had only odd snatched sleep since
Thursday am and it was now Monday night. Thank god for Ronald McDonald House Bristol
(I’ll guess you’ve never heard of it before we hadn’t they helped sponsor the building of a block
of rooms for the families of children at the Royal Bristol Children’s Hospital (they have other
homes elsewhere in the UK) having built the house the charity which runs it now has to raise
£130,000 per year to run the accommodation.

GOOD NEWS Alex has "Streptococcal A ", a bacterial infection which has caused Toxic
Shock and Septicaemia similar to the Meningitis every parent fears but much more rare.
Because the team now knew what was wrong with him they could tailor Antibiotics fight to that
                        infection. They were still checking for other things as well Alex was
                        still under full sedation and being kept alive by a ventilator and a
                        number of syringe drivers each one delivering a different drug to him.

                          He also received a number of blood and plasma transfusions (thank-
                          you to all those who give blood you helped save my son’s life).

                          Whilst undergoing all this treatment they took regular blood samples
                          from Alex which are analysis from which they can determine the
                          stated of the infection and the fight between the bacteria and the
body. At one point Alex white blood cell count (these fight infection) dropped to 7 we would
normally expect our cell count to be in the hundreds.

Tuesday 19th August – we reached a Turning point today, the staff felt Alex had passed the
worst of the infection and they decided to start bringing him around. This can take several days
as the sedatives build up in the body and can take some time to clear his system. The staff have
been throughout monitoring all of Alex intake liquids and output (wee) and were trying to

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balance them he was swollen beyond all recognition he hands, feet, arms, legs as well as his
eyelids were all puffy and full of fluid. When the body goes into shock as sever as he had done
the walls of veins and capillaries allow water within the blood to seep into the flesh causing the
puffiness and a shortage of fluid within the blood stream which has to be replaced it’s a vicious
circle.

Wednesday 20th Overnight Alex had began to move and regain consciousness, he was put
under again, the team needed him not to move he had three Canola’s in different part of his
body infusing drugs a ventilator putting rich air into his lungs the last thing they needed was a
small baby plucking at all these vital lines, so he was put back under but not so deeply. They
began to wean him away from the breathing support it progressed from a fixed volume of air to
allowing Alex to breathe for himself.

Thursday 21st continued in the same manner they continued to remove various support as the
time progressed his heart was beating for it’s self, his digestive system was starting to work
again (the body concentrates on Vital organs when seriously I’ll the bowl is not one of them),
each new organ coming on line was an immense relief we had been made aware that any of his
vital organs could have been targeted by the bacteria or could have failed as a result of the toxic
shock or septicaemia, but as each of his organs came back on line they performed J.

Friday 22nd Was a big day for us all, Alex was moved from the ICU to a medical ward still as
an Acute patient but he was out of ICU and off the danger list, they wanted to keep him in
Bristol rather than transfer back to Devon so we would be close by should he deteriorate again.

Friday 29th Alex has continued to improve over the last week, we’ve now had smiles, Giggles
and he’s paying interest to what is going on around him, he’s still on Morphine every four
hours, Paracetamol every 6 hours, Ibroprofen every 6 hours and 2 different types of Antibiotics
infused through a needle into a vein in his foot. There have been small drama’s, his cannula’s
have failed because his veins are collapsing, he refuses to use his legs because they’re too
painful, he has Abscess on his head and now screams at strangers (most of them in the past
week have hurt him by sticking needles into him) all things which 3 weeks ago would have
been terrifying but after the week in ICU they pale into insignificance.

He is a world away from the Baby on a Ventilator having his chest compressed by a consultant
2 weeks ago.

We all moan about the NHS but when you have something seriously wrong with you they go to
the max to make you better.

                                         www.shebbearvillage.co.uk
The Consultants, Registrars, Nurses and support staff have all been helpful, informative,
comforting when we’ve been scared and above all professional. We haven’t named the
individuals involved the Devon Doc’s out of hours Doctor, the Staff at the NDDH, the retrieval
team, and everyone at PICU and Ward 38. Because if anyone else had been on duty we are
confidant the outcome would have been the same. Those of you who have saved his life know
who you are.

You may remember on the Friday night we thought he was going to die
and were praying for help from anyone. Well there was a poster on the
wall for the Grand Appeal www.grandappeal.org.uk and the fundraising
they undertake to support the Children’s Hospital and I vowed that if
Alex survived I would undertake a sponsored event every year to support
the children’s hospital; the poster at that time was for a Skydive on the
20th September. Not something I’ve ever done, I don’t even like heights.
But Alex has survived so here we go. The PICU currently need 6 syringe drivers which cost
£1,200 each. On Monday one of Alex’s failed they had a spare but the unit was full of very sick
children all of whom are reliant on these devices and they need the additional units to continue
to offer this support to very sick children. I’d like to raise enough money to buy the 6 units
£7,200. The skydive costs £190 I have paid this fee so every penny you sponsor me will go to
buy syringe drivers for the PICU at Bristol Children’s Hospital.

You can contact me directly or go to “Just Giving” to sponsor this jump at
www.justgiving.com/daveasimpson

or visit the Doctors Surgery or Shebbear shop where there are sponsorship forms




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