We made it safely home from Salt Lake City. I admit that the trip wasn't exactly what I expected - or rather hoped for, but regardless, I came away with some valuable information.
As we met with the neurosurgeon I gave him a history of what the past six months of Elisabeth's life have been like - the two shunt revisions, the intermittent fluid accumulation around the shunt, and the severe episodes of pain.
Primary Children's was the fifth hospital we have taken Elisabeth to. All the while I have suspected that what we have been witnessing is shunt related...it just seemed so obvious...but I have had entire neurosurgery teams tell me I was crazy. This visit was different though. I had a surgeon who actually listened to me and agreed that it was probably a shunt issue. To be more specific, the surgeon is suspecting intermittent shunt failure due to chronic over drainage (exactly what I had asked the Seattle Children's about).
He is going to write a letter to Elisabeth's neurosurgeon in Spokane with the recommendation that we reprogram her shunt to allow a little more pressure in her brain, thus preventing (hopefully) over drainage. He is also recommending that we get an MRI of her spine and brain (another thing that Seattle Children's refused to do). After looking at her spine and it's severe scoliosis, he believes there is a slight chance that she has syringomyelia - a condition where the CSF from the brain pushes into the spinal cord - thus causing deformation. This is something that will be shown on the MRI.
So that's the update. We didn't get a quick fix, but at least I have a surgeon backing me up on my shunt suspicions. I am hopeful that a simple reprogramming of her shunt will bring her relief...time will tell!
Salt Lake City in the fall.
The drive home. These pictures were taken only 10 minutes or so apart!