Our son Luke was just 6 weeks old when he became suddenly and unexpectedly ill last June. On arival at Dorchester Hospital he was diagnosed with a congenital diaphragmatic hernia meaning his bowel had gone into his chest and was squashing his lung. This condition is normally diagnosed prior to birth and as a result of the late diagnosis Luke was very ill. We were told he would need an operation at Southampton and that a retrieval team from the Paediatric Intensive Care Unit (PICU) were on their way to collect him.
Unfortunately Luke's condition continued to deteriorate very rapidly and we were told there was a great possibility that he wouldn't make it to Southampton. We spent our whole journey praying we wouldn't see his ambulance at the side of the road and were hugely relieved to learn that he had made it. Luke was so gravely ill though that they were going to have to operate on him on the unit. We were told that he only had a slim chance of survival and we kissed him goodbye once more wondering whether this would be the last time we saw our little boy alive.
To our great relief the consultant came out about an hour later to say that unbelievably Luke's condition had improved during the operation. However, we weren't out of the woods yet as Luke's bowel was hugely damaged and without any good bowel it would be impossible to survive. We spent the next couple of days on tenterhhoks hoping that his bowel would "pink up" and start looking less dead. It didn't, and 3 days later he went back to theatre to see if there was any salvagable bowel. We were offered the chance to have him baptised with the underlying suggestion that we might have to make some difficult decisions during his operation. Again, we were relieved to receieve a phone call from theatre to say that contrary to expectations they had found nearly half of his bowel in a saveable condition. Our amazing little boy continued to defy the odds!
We were told that the next couple of weeks "would be a rolercoaster" but that we could probably be home in a couple of months. Little did we know then that we would spend nearly a year in PICU as an almost permanent resident!
Instead of improving, Luke's condition remained unstable and his breathing became a focus of concern. His lung hadn't reinflated as expected and following investigative surgery it materialised that Luke's lung had in fact died during the initial trauma and would need to be removed. This was an unheard of occurence and we were told again that Luke might not make it through the operation because of the high risk of uncontrollable bleeding. We were so glad to see him return from theatre and at last felt that he would be on the road to some kind of recovery. It was not to be, and Luke continued to mystify the consultants by struggling with his breathing and having frequent "death episodes" were he would turn blue and require emergency treatment. One such episode needed cardiac massage it was that severe. A subsequent tracheostomy did not alleviate the symptoms and following a severe infection of the chest bone Luke was referred to GOS as the consultants were baffled by his failure to show signs of improvement.
And then something amazing happened...It was not one particular thing that happened, but very gradually Luke did start to improve and as he got bigger and stronger his breathing problems started to become less severe. By Christmas we were discussing a package of care to get him home and then after spending his first Birthday on PICU we got discharged, and by the end of May we finally had our little boy home. It has been amazing and a real joy to see what a character he has become.
We have absolutely no doubt that if it had not been for the skill and expertise of the PICU team, Luke would not be here today. We owe his life to them. During our stay they became like a family to us and their professionalism and hard work never ceased to amaze us.
Many children would not survive without the state of the art equipment that PICU have and some of this is bought by Friends of PICU funds. In addition they provide simple comforts such as rocking chairs, blankets and clothes which help parents feel as 'normal' as possible in what will probably be the most horrific situation they will ever find themselves in.
Last year my brother ran the Great South Run for PICU, but we feel very priviliged to do it this year, not just to show our immense graditude to the PICU staff, but also as a tribute to our amazing son who has taught us never to give up no matter how difficult the circumstances!!
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