As I have talked to the Neurosurgeon more and more, I have begun to understand more clearly about Evangeline’s spine and what happened in the operating room.
Children with Diastomatemyelia have a split spinal cord separated by a boney spur that penetrates the cord.
Usually, children with this situation have two healthy cords.
Evangeline does not. She has one healthy cord that feeds her left leg, and one extremely tiny cord that almost just looks like a nerve bundle. It appears that this tiny, fragile cord holds all the nerves that feed her right leg.
When Dr. Sutton spread the two cords apart to shave the bone out, the OR team immediately lost all nerve signal to her right leg.
No matter what they did, they could not recover the signals.
Without those signals, they could not continue the surgery and detether the cord at the base of the spine as they had planned to do.
They immediately stopped the surgery.
At this point, the bone spur has been removed, and the cord is free from risk at the point of the split cord.
It appears that the tiny cord suffered nerve damage at the point when the signals died. It does not appear that the reduced function is due to swelling, but rather an injury that may or may not heal.
Since when nerves do heal, they heal very slowly, we may be looking at a very long recovery.
Doctors plan to sit her up today, and hopefully to reduce her vasoconstrictor medication so that the central line can be removed. While useful, they are a very high risk for infection.
Physical therapy will be evaluating her today and developing a plan to begin to work her leg.
At this point, I don’t know if that will be done as an inpatient or an outpatient.
So today, while we are asking and believing God to do the miraculous in Evangeline’s life once again, we are choosing to be thankful. Instead of focussing on all that Evangeline has lost again, we are choosing to focus on all that she has, and all that we have, on all that God has done in her life, and all that He is yet to do.
We have Evangeline. She is fiercely loved, and very much alive. She has feeling in her leg and a little movement.
She is a miracle.
She is ours. She’s not walking this road alone.
We are blessed to carry this cross with her.
And we are ever so thankful to be her mommy and daddy. In all the world, God chose us, and that still just wows me, and humbles me, and brings me to my knees in awe of Him.
We covet your prayers as we walk this next road as a family. May we draw closer to each other and to our Savior.
May God use this, too, in our lives and in Evangeline’s life to grow us all closer to Him.
And may it all be His glory.
We praise Him!