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William Jones – September 2015

rsz_william_jones_pic
William Jones Aged 1

William was born in July 2014 with Congenital Heart Disease and Down Syndrome, diagnosed during pregnancy.  What we didn’t expect was a rapid transfer to Southampton General when he was just 1 week old for urgent surgery for William to survive. William underwent surgery when he was 10 days old to remove the narrowing section of his aorta. William made a fast recovery and after a couple of days was out of paediatric intensive care (PICU) and back on the children’s cardiac ward.

Hospital visits and cardiac clinics were frequent and in October 2014, when William was 3 months old, it was time for open heart surgery to repair the defects inside William’s heart.
Later in the day we received news that the surgery to close the hole had been successful however one of the valves was leaking and whilst an attempt to repair it had been done it wasn’t known how successful this would be and only time would tell if William’s heart would cope. Within a week it was evident that William was struggling and the decision to return to theatre for a second repair was made. Our little boy was stable but very weak, heavily sedated and very tiny having lost almost a kilo in weight.

Everything was looking good late November and we were getting ready to be transferred to our local hospital but a few hours later William deteriorated. He went from a happy playful little boy to non responsive in minutes. He was rushed to PICU where on arrival his heart stopped, he needed compressions, intubation, nitric oxide and adrenaline. We were called to the unit to be near William as the team worked on trying to bring our little boy back. It was 36 minutes of down time before we got a response, seconds before the decision to stop CPR was about to be made. I remember sitting there, numb, willing our little boy to fight. As the doctors and nurses stabilised William the consultant came over to talk to us, shaking his head and smiling. I will never forget his words, “that boy has an amazing tenacity to cling onto life, I don’t know how he is still alive”.  

All the previous repair work was undone and the surgeon started again, let’s not forget he was working on something the size of a strawberry! It was late that night when we stood in the corridor listening to the surgeon tell us that William was stable, he hadn’t replaced the valve but had managed a better repair on the valve. The best news in a long time. We would now, once again, have to wait and see.

That was until New Year’s Day this year when he acutely deteriorated and was rushed back to PICU and he started slipping away again. William was found to have liver failure and we were told that nothing could be done. He was given medication to ‘mop up’ the liver but we would just have to wait and hope that his liver repaired itself. ‘Hope’ had become a good friend of ours and one that never left us. To our amazement, 6 days later William was out of PICU (again) and back on the ward.
For the next 4 weeks he went from strength to strength until one day at the end of January we heard words that we never thought we would hear, “we are looking at sending you home on Tuesday”. We will always be in awe of the highly skilled team that cared above and beyond for William and made it possible for this to happen.
Since leaving hospital William has done nothing but move forwards. He is a happy, playful, busy little boy .Our little boy always has a smile on his face and is so much fun. He is determined and strong and enjoys every minute of every day. William is our incredible brave Heart Warrior.

Louise Fetigan says ” Reading some of the Little Trooper of the Month stories puts everything into perspective, so many military families out there are dealing with exceptional real life situations and William has shown he is such a strong Little Trooper in just 15 months he has been through so much. We send all the Jones family all our love and hope William goes from strength to strength. We sent William a voucher for the Early Learning Centre and hope he enjoys his toys”

Williams father is W02 Jones who is currently serving with 29 Regt RLC

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