JOURNEY AS TOLD BY MOTHER LOUISE
Jack’s journey began when he was 7 months old and his head circumference was jumping high above the 95th percentile. Despite this he was still doing the typical things – rolling, sitting, etc and was the happiest little man! A check ‘just in case’ on ultrasound revealed marked hydrocephalus and an appointment with a neurosurgeon planned. Before that appointment could be booked, Jack suddenly became symptomatic and we rushed him to emergency.
Jack had his first VP shunt placed and so began this rollercoaster ride. Jack had a good few years before our world turned upside down with his first shunt blockage, the trauma that involves and first shunt revision surgery. The next 18 months we had another blockage and revision, intermittent blockages and one further shunt revision surgery making it four hospital stays with three surgeries.
The most difficult thing is the unpredictability of if all. Jack could be laughing, running around, and yet completely oblivious to us all he is moments away from it being blocked and our gorgeous boy deteriorates so quickly. Gratefully he shows such strength and resilience and as quickly as it appears, once the revision has occurred or, as has happened and the blockage clears, he is back to his charismatic and energetic self. It’s a moment by moment condition and that makes it cruel to be honest.
We’re hoping for a very long time between his last surgery to the next and that he continues to thrive. Jack has started prep this year and loving it. Making plenty of friends, getting into new things, learning a heap, and loving life!