Mason has hydrocephalus. It is caused by his Arnold Chiari malformation (type 2), which is caused by his Spina Bifida. Basically, the pulling of his spinal cord causes his cerebellum to be pulled to the opening at the base of his skull, blocking the flow of CSF from his brain. Thus, hydrocephalus. He had a VP shunt placed when he was 15 days old to help alleviate the pressure on his brain from the fluid. That shunt failed in July 2016 and he had a revision (they replaced the portion going from the valve, which is behind his ear, to his ventricles in his brain.) We learned at a routine appointment on March 15 that his VP shunt had failed again. Our neurosurgeon in Austin recommended trying an Endoscopic Third Ventriculostomy (ETV) with choroid plexus cauterization (CPC) instead of placing a new shunt. This involves creating a new pathway for the CSF to drain from his brain through making some "holes" (not destroying brain tissue).
We had heard of ETV before. We had even asked about it initially when he needed his first shunt. However, failure rates are higher for kiddos before they are three months, so it wasn't an option at that time. ETVs can be awesome, if they are successful. This could replace his need for a shunt and be the only surgery he needs for his hydrocephalus for the rest of his life. HUGE. However, the risks are also higher. Our surgeon quoted us that in the studies done on ETVs, the risk of hitting the basilar artery (really bad) was 1 in 400. We felt comfortable with the surgeon, his humility (he told us that he had recently stopped an attempt at an ETV because he felt he was too close to the basilar artery), and decided to try it. Mason's surgery was March 21st.
The procedure was successful and Mason handled the anesthesia like a boss, as usual. The hardest part was that we had to stay in the hospital for 3 days with an external shunt coming out of Mason's head to monitor ICP (pressure in the brain). Now, I have worked as a nurse in an ICU and a cardiac step-down floor; thus I am no stranger to cord management. However, a cord hanging out of your baby's brain puts cord management into a new light. It freaked me out. It was so difficult to manage it while nursing him at night. Especially because he would become unlevel when I moved him from his crib to the chair to nurse and the alarms would all sound off like crazy and, here I was, holding a half-asleep and hungry baby attached to a pole by a cord from his head while trying to silence alarms on a monitor screen that is above my head. Tough work.
Needless to say, I was grateful when they gave us the all-clear after three days in the hospital with a head leash and pulled the exterior shunt and let us go home. Mason has just really started moving since this procedure. He is so close to crawling and has learned to get from sitting, to his belly and back to sitting. His increased mobility is truly amazing. (I tried to include a video of him doing his tricks, but I don't seem to know how to make it work, so....)
We go tomorrow for his follow-up visit for an MRI and an appointment with the neurosurgeon. Please pray for continued good reports from the ETV procedure and continued increased movement for our sweet boy.
