Thursday, November 14, 2013

Enigma

Ian got to play hooky from school yesterday, but it wasn't really to have fun. We took him to the hospital to have a contrast test done on his shunt. 

His shunt is a tube that drains fluid from his brain into his abdominal cavity. It's controlled by a valve under his skin on the side of his head. He's had a shunt since he was a week old, and it was revised when he was three months old because one side of his brain wasn't draining fluid. The shunt was extended into the left side of his brain so that it would also be draining the fluid from that side. The surgery was successful, and it's been smooth sailing - shunt wise - the past five years.

Last month at spina bifida clinic, we described some behaviors to the neurology PA that made her suggest Ian have a quick MRI, just to check his shunt and ventricles. The MRI showed that his ventricles were the same as they were when he was three months old - the left side was full and large, and the right side was small and deflated. Suspecting that the left side wasn't being drained by the shunt, we scheduled a contrast test. Ian would be sedated, and they would inject contrast into his shunt valve, then put him in a CT scanner to see if the contrast showed itself on the left side. If it did, that would mean that the shunt was indeed draining the left ventricle.

In the radiology waiting room wearing his Finn hat and magic PNF shoes

Once we got settled in the prep room, Ian was ready to break out the iPad. We ended up waiting almost an hour for the anesthesiologist, so we all got some snuggling and iPad time in before it was time for Ian to go to sleep.


They let us stay with Ian until he fell asleep, which was very difficult. I don't know that I'd do it again if I was given the chance. Seeing him go limp in Justin's arms was just too much for me - I started crying and we were ushered back to our little prep room to wait out the test, assured that he would be fine.

When they brought him back to us, he was awake, but quiet. As soon as he saw me, he started crying. I felt horrible for him - he was groggy, confused, and scared. He was angry about the IV in his hand. We tried to calm him down by turning off the lights and giving him his snuggle blanket from home. 

A bit P.O.'d after waking up from anesthesia 
After a little while, we could see glimmers of our Ian boy coming back. He said, "I want to play Wii." Luckily, the Child Life Department at the hospital had already put one in the room.

Ian and Justin playing Wii in recovery
After an hour in recovery, we got him to drink a little water (using our old stand-by, reverse psychology), and we were free to go. We headed upstairs to see Ian's neurosurgeon. 

Back to his old self, waiting to see the neurosurgeon
Ian's neurosurgeon came in and told us good news - the contrast did show up in Ian's left ventricle, so the shunt was working and it was in the correct place, so Ian wouldn't need a shunt revision surgery. We were still confused why his ventricles would differ so much in size if his shunt was working properly, and that is what the neurosurgeon didn't have an answer for. He said Ian's brain seems to be choosing to be this way - to not equalize the ventricles. He had never seen another case like Ian's. Ian's brain...is an enigma. 

There isn't really anything more we can do. Ian has a shunt, and it works. His ventricles are very unequal, but they're not under pressure at the moment. All we can do is let his enigma brain do its thing, and see what happens.

Today, Ian was happy to return to school and see his friends. I continue to be amazed at how resilient this little boy can be!



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