We had our follow up appointment yesterday from our trip to the ER when we found out Little Mans shunt was over draining. They adjusted his shunt from a 1 to a 5 while we were there. Today we got to sit down with his neurosurgeon and get a better understanding of everything. Since his shunt has been over draining, his brain started to collapse. He showed us images of the CT scan from his ER trip pointing out where the dark areas(fluid) between his brain and skull was caused by the brain collapsing.
Seeing that image it really sunk in. Little Mans brain had started to collapse, we don’t know for how long and we had no idea it was going on. Hearing about Hydrocephalus and excess fluid on the brain to someone might not seem so scary when it doesn’t effect them, but realizing complications like someone’s brain collapsing might put it into better perspective on how dangerous this condition can be.
Luckily adjusting his setting has led to improvements. The neurosurgeon said that there was a 50/50 chance this would work and if it hadn’t have then yesterday we would have been scheduling surgery. The MRI yesterday shows that on the right side of the image there is barely any gap of white/fluid (backwards colors from his CT) between his brain and skull, the left side of the image is better than it was but still needs improvement.
We are so glad that adjusting his setting has helped and hope it continues to do so without the complication of pressure building too much. We go back for a follow up MRI and neuro appt and I’m nervous he might still need surgery. As a parent never seeing this before my brain is thinking if one side improved so much why didn’t the other, will it continue to improve or will he need surgery? I know the day will come when his shunt will need to be replaced. I just pray it’s so far down the road that by then there will be a better option. With this over draining complication this is a different surgery.
I don’t think a day will ever go by when I don’t worry about when he will need brain surgery again. I don’t think about it all day long but there’s always that worry in the back of my mind and when he does something that may be a sign it brings that worry to my immediate thoughts.
Are you the parent of a Hydro Warrior?
What are your worries?