Well, it seems our little guys hasn't been relieved of all of his pain. His pain episodes continue to come. At this point, we've pretty much determined that his pain is a result of the surgery (pressure changes inside of his head).
He gets what seem to be, intense spinal headaches that come on after just minutes of sitting upright. They cause him to become inconsolable and to start vomiting.
So after several long days (and nights) of having to keep him lying flat, I called today to get in touch with his neurosurgeon. Fortunately, Pierce has an AMAZING surgeon who, even though on maternity leave, was willing to take a call at home from her nurse. She agreed that something should be done.
As of now, she thinks his headaches are being caused by one of two things (possibly a combination of both):
1) Aseptic meningitis. This is not the same as bacterial or viral meningitis as it is not caused by an infection. Aseptic meningitis is an inflammatory process that can occur after Chiari decompressions or similar type surgeries. The treatment for this is a 3 day round of high powered steroids (let's hear it for 'roid rage!).
2) Overdrainage of his VP shunt. Pierce seems to have classic overdrainage symptoms- fine while laying down, worse when upright. The good news is that treatment for this involves adjusting the pressure of his VP shunt, which is easily done by a magnetic device placed over the shunt. No surgery or invasive procedures needed. His last CT scan shows that his ventricles are quite small and this also would point to shunt overdrainage.
At this point, we have started the Decadron steroids to treat aseptic meningitis, and we are planning to return to Duke next week to see his neurosurgeon to have his shunt adjusted.
Pierce hasn't left the bed in 2 days :( Fortunately, Elmo and Veggietales seem to keep him happy, but we will be glad when he's back to himself and able to sit up and play.
Needless to say, we would really appreciate your prayers as we try to fix the source of his spinal headaches. Please pray that he would respond well to the steroid treatment and/or the shunt adjustment. And pray that these symptoms would subside quickly so that Pierce can find relief.