I feel defeated, deflated, disappointed, sad, upset, etc.
In May, Parker had a shunt revision (brain surgery). It seems like it took a long time to get there. I didn’t talk a lot about how we got to that point because I try to be positive. It was a rough road. I know we are very blessed when it comes to Parker’s health. I am in contact with hundreds of families and many of them struggle with the health of their children with Hydro. It isn’t uncommon for a child to have many shunt surgeries. Parker has only had two in her 4 years. Our Godson had 8 brain surgeries his first year of life. This isn’t unusual. 50% of shunts fail. It is a sad fact.
Last Fall, we thought Parker was having seizures. It turns out she was having intermittent over-drainage of her shunt. The malfunction started every 6 weeks then over time happened every couple of days. The pain is excruciating.
When Parker had her revision in May, our Neurosurgeon suspected her skull was too small for her brain and that was ultimately the cause of her episodes. He surmised the revision was only a band-aid and ultimately we would need to do Cranial Vault Reconstruction to make her skull bigger. It is a 7-8 hour procedure, and I’m totally scared.
Tonight, Parker had an episode. Should these persist, CVR is in our path. God bless my little pumpkin.