Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 Hi, thanks to everyone, it's great to hear from you all. It is so encouraging to read of all your stories. I have had a lot to do with Bert and Bridget. Bert was my guardian angel helping me to make a very hard situation into an informed one. She's fantastic! has had two open heart surgeries. The first was at 10 days old, quite late for a kid with HLHS(half a heart) as most kids get the first stage Norwood at a few days old. But was undiagnosed and " crashed " at 5 days old. (Total organ failure) We then had to fly across the other side of Australia to Melbourne to receive treatment. He then had his second open heart surgery at 4 months old (BCPS) and will need a third open heart next year (Fontan) which will complete the three staged open heart surgeries. We lived in the Royal Childrens hospital for 4 months while battled for his life, as kids are so physiologically unstable, but after the second open heart, they stabalise and we went home. He is now so happy and healthy at the moment, although his is constantly blue (tinged)as his circulation hasn't been completely separated yet. The professionalism from the cardiologists and surgeons were amazing, which was why I was a little slow off the mark coming to realise was not getting the same quality of care with his scoliosis, assuming he would receive the most effective and up to date treatment for his scoliosis. However, that is the past, and now he is in his POP jacket and loving it. He thinks it's a ninja tutle shell. He run around the house doing all his moves. It's a crack up! Take care, I'm so glad I'm able to chat with other parents in a similar situation! Quote Link to comment Share on other sites More sharing options...
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