Tuesday, September 4, 2012

Hydro... what? That's something with water right?

September brings a lot of things. It brings fall with cool weather and changing leaves. Classes start back, and it brings college football. But you all don't need me to bring your attention to these things. You're living them with me. One thing you probably don't know is, September is Hydrocephalus Awareness Month. Please don't stop reading here. The love of my life was born with this. It effects our everyday lives, and it could yours one day too.

*DISCLAIMER: I am not a medical professional, nor do I pretend to be. This blog contains information in my own words to help educate my family and friends on my son's condition. For medical advice on hydrocephalus, please seek a neurosurgeon. For more information on hydrocephalus you can explore The Hydrocephalus Association.

What is hydrocephalus? " Hydrocephalus is an abnormal accumulation of fluid—cerebrospinal
fluid, or CSF—within cavities called ventricles inside the brain." Also know at "water head" or "water on the brain". It is commonly treated by the surgical placement of a shunt. (A medical device consisting of 3 parts: the ventricular catheter, a small tube inserted through the brain into one of the ventricles; the reservoir and valve, a hard, small piece placed under the skin on the outside of the skull where the valve regulates the drainage of CSF based on inter-cranial pressure and where neurosurgeons can "tap" the shunt to check the flow of CSF and test for infection; last is the drainage catheter (a peritoneal catheter in James David's case), the longer catheter that drains the CSF from the valve and redirects it to another part of the body where is is reabsorbed. However, shunts are not a "cure", but a mere treatment for hydrocephalus. Shunts can malfunction, and may possibly need to be revised. Another, newer treatment for hydrocephalus is an Endoscopic Third Ventriculostomy (ETV). This is where neurosurgeons place a hole into the bottom of the third ventricle to all CSF to communicate more freely between the ventricles. This as well is not a "cure" for hydrocephalus, and can also fail and need to be revised when the hole in the ventricle grows back together.

Our story: We were aware of James David's hydrocephalus (as his other medical conditions) before he was born. We were told there was almost a 100% chance he would need to be shunted after birth. The days following his birth his head circumference continued to grow...
At five days old our amazing, wonderful neurosurgeon made the decision to shunt James David. We were told of all the risks and benefits of a shunt, and that there was a chance it would one day have to be revised. Little did we know that just a week and 2 days later this would become our reality and send us down a road no one thought we would ever travel. To date we have had 8 more revisions totaling to 9 revisions. My kid is rare ;)  My precious son doesn't play by the rules. He writes his own book. Compared to other kids I've seen in shunt failure, James David barely shows symptoms. He is tricky.
James David's known shunt malfunction symptoms:
  • Insomnia
  • Fussiness
  • Anorexia
  • Swollen spinal closure
  • Head Banging
  • And sometimes, but not always, Swollen, Full fontanel.  
 Hydrocephalus effects our everyday lives. Every headache, tempertanturm, spit up, anything constitutes panic on my part. However, it does not slow my tiny man down. Other than slightly delaying his speech, my little man is showing no side effects of his condition. He is still the smart, funny, determined, little man he has always been. We hope to bring light to this condition. How common it is. How it effects those with it. And to help support research for a CURE.