Hello ,and relieved to have found this site.I am a mom of a 7 year old boy named Raffi who has hydro. First year of life he had 6 surgeries. He had no complications until this past August when during a routine ct the nsg decided to revise one of his 2 shunts. Since then he has had a total of 4 revisions. After the first surgery in August the new shunt worked to well and he had a collapse which caused a sdh. One month later it blocked and another revision. The next day the shunt was found not to be in vent so another surgery was done. Six months since last revision and he is still suffering daily with headaches, the nsg will see him on the 18th of April. Should he revise again. It is breaking my heart to watch Raffi suffer on a daily basis. He did not attend school at all this year. I have manyyyyy questions and would love to hear from the people who know first hand what Raffi is going thru. I don't htink Doc's truly understand. One quick question...is the burr hole supposed to become smaller? Six months and it is still the size of a quarter. I consider this a blessing because it helps me know when pressures are up and I think he is getting relieg from it.. any comments would be more than greatly appreciated. I have felt so alone because Raffi is one of those stoic children I have read about and will not tell me anything. Just asks us to leave him alone. Red cheeks and ears and funny looking eyes are his indicators to me that he is not well. Every day though??
Thanks