Destiny’s Journey

Hello Everyone, This is our first official post and I think I am going to give a little background on our most recent visits to the IWK in
Halifax
Canada. Destiny was diagnosed with Hydrocephalus at 2 weeks of age and has had six VP shunt revisions with her last one being just a few months ago. I knew she needed a new shunt in January 2007 after we returned from a vacation to Disney World. She started getting bad headaches, dizziness, and a general feeling of unwell. Although I knew she was having issues with her shunt it wasn’t showing up on MRI’s, CT scan’s, even an ICP Monitor for two days came back with normal pressure levels. Eventually after multiple trips to a hospital 4 hours away you feel like maybe, just maybe your gut instinct is wrong this one time. Thankfully I didn’t listen to her pediatrician say it was childhood constipation, the flu, and well basically tell me she is faking it and I am absolutely mad. I just couldn’t shake the feeling it was her shunt. She normally is very active and healthy. To see my child hibernate to her bedroom because she was too dizzy to get out of bed or the light bothered her eyes and the sheer pressure she felt with the constant headache killed me. When I was about to give in to what all of the specialists we telling me we once again got the dreadful news. We had a follow up for her post ICP Monitor. Two weeks prior to this appointment in another province a MRI was ordered. She was having a very bad day when the did the mri. When we arrived for our appointment we were told again that it must be migraines and that it is quite common in girls her age with the begging of puberty. When I asked how the MRI looked he asked when it was done. When he viewed it he saw what I have suspected for 8 months. Her shunt was not working. He then ordered a MRI to check to see what it was looking like at that moment. Well it was confirmed, her shunt was not working, and she needed to have it replaced the next day in emergency surgery. Surgery went very well, she recovered quickly as usual and here we are now. Four months post shunt revision #6 and still unsure of everything. I do think she has migraines but her last MRI was not perfect. So we are heading back to the children’s hospital for another check up. This will make 15 four hour trips each way in one year. I am so grateful that what I saw on a daily basis finally showed up on scans. Through all of this she still keeps a very positive outlook on life, even with her new “snazzy haircut”. So hear we are, full of questions and hoping and praying that this shunt will give us more then two years this time.