Go to http://lizandandyrunlondon2010.blogspot.com/ for our training blog with regular updates on our progress.
Please take the time to read our page. It best explains why we are running the marathon for Bristol Childrens Hospital. Andy works with Alex's Dad and to be honest, if it can make Andy fund raise (this is a first!), it MUST be a worthwhile cause... ! As you know, this will be Andy's 5th marathon and my 1st. We are both training hard and looking forward to the challenge.
Diary of a devastated Dad......
"Sunday 10th August 2008, Alex was 27 weeks old and rather than his normal cheerful self he was grumpy we had a very poor night’s sleep Sunday into Monday but other than having hot cheeks he was showing no other symptoms so we put it down to teething.
On Monday 11th He remained grumpy but slept most of the day (given how little sleep he’d had in the night it wasn’t a surprise), and put him to bed as normal at about 8pm. We kept checking him and came to the conclusion at about 10pm that he was detereorating and we were not happy, he wasn’t showing any signs of anything actually being wrong with him, but was obviously not well. We called the out of hours doctor service and arranged to meet them at the local A&E (about 15miles away) The doctor carried out a thorough examination of Alex but could find nothing obviously wrong with him, except he thought he could see a bit of redness in one ear. His temperature was 36.8 which is fairly normal the doctor felt it was probably a virus. We went home dosed him with Nurofen to supplement the Calpol we previously given and put him back down. But he was up every 60 to 90 minutes all night.
Tuesday 12th Alex was still under the weather so we decided to take him down to our Surgery, spoke there with our GP who again examined Alex, still no signs of anything in particular wrong with him, temperature normal, still eating/drinking no rash.
Thursday 14th he was unchanged, we continued with the Calpol & Nurofen as directed, he was still showing no other obvious symptoms (rashes, Light intolerance, joint stiffness) he was just not well, it looked like he had a bad bug which agreed with the Doctors diagnosis of Flu. But he had his worse night yet up constantly all night Deb was up with him the first half of the night I the second half of the night.
Friday 15th We came to change Alex at about 9am 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 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. They arranged for us to re-visit on Monday and 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 hours 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 obviously unwell and at about midnight 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.
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. It was explained they needed 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 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). 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 but 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 En 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.
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. 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 "Strep 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).
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.
He is now a world away from the baby on a Ventilator having his chest compressed by a consultant 2 weeks ago.
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.
Since I last updated you Alex has been re-admitted to Hospital. He’d stopped using his right arm which was painful when touched and a rash appeared, not as before a spreading rash but hives which appeared for a few hours then disappeared. The specialists initially thought he may have Cerebral Palsy sustained when he arrested or a stroke. So the rounds of examinations began again. Alex condition is that it is so rare and in each case manifests differently. We’re hopeful of a full recovery."
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