Yesterday morning when Pierce woke up grabbing his head and saying it hurt, I just knew. He never complains of pain. Never. So this had to be serious. Within minutes the vomiting began. And minutes later he was falling asleep on my living room floor. This is not an ear infection, not a stomach bug...no I've seen those things even in Pierce and they are minor. This was serious. I just knew.
I quickly packed a bag, called my mother in law (since Nik was out of town) and we headed for Duke, which is 2.5 hrs away. The whole trip Pierce was puking, sleeping and crying. Every mile. As soon as we arrived, we were whisked away and in an hour or so Pierce was having CT scans and an x-Ray shunt series. And within a few hours it was confirmed that 1)his ventricles were very enlarged with extra fluid that should not be there and 2)his shunt was on the wrong setting. Pierce had a programmable shunt which has a magnet inside of it that controls the rate at which fluid flows. The neurosurgeon sets the setting externally by holding a powerful magnet over top of the shunt and turning a knob (very cool!). He was supposed to be on fastest setting, but he was really on a much slower setting, which could cause fluid to back up over time. A lot of people are probably wondering how he could be in the wrong setting and the truth is we don't know. They do know that microwaves, iPads, cellphones and earbuds are all things that can change a shunt setting when introduced in close proximity to the shunt. Nevertheless, we were hoping the fluid build up was just a result of he wrong shunt setting. So they dialed him down and waited. But Pierce did not improve, in fact he declined. By 3pm he was extremely difficult to wake, unable to talk and his eyes were rolled back in his head. As a parent, this was very hard to see!
So the Neuro team decided to tap his shunt by placing a needle into it and draining off excess fluid. They were convinced it was just the wrong setting. I mean what are the odds it would be the wrong setting combined with a malfunction that just happened to coincide at the same time? (I laugh now typing this because Pierce has always been one to fall into the small percentage category. Always.)
After tapping his shunt, they realized that the shunt was indeed malfunctioning because they were unable to draw off any fluid. At this point, he was unresponsive and his heart rate was dangerously low with high blood pressure (tell-tale sign of increased pressure in the brain) and so they knew they needed to act fast. His neurosurgeon who had been calling to check in on him all day came in quickly and then they took him into surgery around midnight, some 13 hrs after we arrived in the ER. The surgery took about 1.5 hrs (although he was away from us for 4) as Dr.Muh searched for the issue. She found that the end of the shunt inserted into Pierce's ventricle was completely occluded by scar tissue. So they installed a new proximal catheter, and while they were at it, they changed out the shunt from a programmable to a fixed, non-programmable shunt. The non programmable shunt flows at a rate comparable to what his programmable shunt was (supposed to be) set on. Having this type of shunt will save Pierce from having to avoid magnetic things his whole life. And it will mean he can have all of his MRI scans without having to have his shunt reset afterwards! Woo hoo, one less thing to worry about. Fortunately the tubing that runs from his head to his abdomen (where the shunt drains) was working beautifully so they left it alone. That was one less painful thing as that means an abdominal incision and soreness where the shunt tubing is pushed through the fat layers. Ouch!
And so around 430am, Pierce woke up feeling much better. He was able to sleep last night with the help of heavy pain meds and then this morning played a bit before the pain got to him. We have struggled to find the right combination of pain meds for him but he was able to sleep this afternoon and then now. Fortunately, and so comforting to see he has improved tremendously neurologically and is back to talking and eating.
For now the plan is to stay here another night and see how his pain management is before heading home. You guys can be praying that his shunt works correctly for a really, really long time (like forever!) and that he does nor develop a post-op infection.
In a crazy twist of irony, a year ago yesterday we were also at Duke dealing with severe brain pressure issue related to his cyst fenestrstion and thinking it may have caused a shunt failure. I think May 17th may be a day we avoid next year :)
Thank you to all who have written, called, texted and shared our story. We are so thankful to have you on this long and sometimes weary journey. We love you guys and are so thankful to have the support system that we have!