Day 18 has proved been a roller coaster ride.
We started the day meeting with the hospitalist for our "wrap up" appointment. She is a kind, emphatic doctor. She relayed to Bart, Eben, and I what the team have discovered. What we know, Eben is significantly low in Iron and vitamin D. The team is in agreement that the medication that Eben has been prescribed may have acerbated some of his symptoms and he has started the process of weaning him from them. After a full spinal MRI, it was revealed that Eben has a tethered spinal cord. The team believe that he has Pseudobulbar Affect and narcolepsy. Both will require him to be completely off his current medication and come back for extensive testing in 2 months. Finally, Eben is suffering from lymphedema which requires intervention.
All of this points to a cold, hard truth that Bart and I have been mulling over for days, and it finally been confirmed today. Eben's lower brain stem is "decomposing." The neurologist believes it is the root of all these other functions failure, because they all stem from the same place.
The doctors here believe Eben's condition is degenerating because he is trapped in a viscous cycle of over-shunting. The shunt is constantly having to be adjusted to accommodate increases or decreases in pressure. Which results in too much cerebral fluid and then an adjustment then a few short months a bleed develops and then another surgery to correct the bleed. Another words Eben's brain is not holding up to the pressure of being constantly revised. So the question is....
HOW DO WE GET OUT OF THIS VICIOUS CYCLE WITHOUT LOOSING OUR BOY?!?!?!?
After many tears with the hospitalist, she called the other Pediatric Neurosurgeon at Mayo, and he agreed to do a consult with us tomorrow in between his surgeries. So, this is the prayer. We need this doctor to want to help. We need him to want to intervene. We need him to have a plan. I refuse to believe that we are just going to "manage his care" until he is no longer is with us. If this doctor does not want to intervene, we will go home to manage his symptoms. The focus will change to managing his decline with as much care as can be provide.
Our time here has been extended a few times, each time with a new hope on the horizon. We believe we are in the right place for answers. We believe God has provided for us to be here. Thank you all so much for praying for us.
As far as our needs go, we need direction. Bart will be going home tomorrow. He has stayed with us this week, but can't take another week off without pay. The kids at home are getting antsy and want to be home. Eben has to have a big test here on Tuesday and begin to manage his lymphedema. I spoke with our doctors back home and they can not replicate the treatment at home. So, we will have to stay for it here.
Bart and I thank you for all your love, prayers, and provision. Please pray for us between 8-9 am tomorrow. God Bless Y'all.
Bart and Candice