Evie Update: Tethered Cord Surgery

 Surgery time has come again for our tiny but mighty, Evelyn. 

On Friday, May 23rd, she'll have surgery to release her tethered spinal cord and dermal sinus tract.

 

This will be Evie's 9th hospital visit in the US, and we don't even want to fathom the number in her two years of life in China.  Though we hate the thoughts of walking back through the doors of the hospital and all the trauma that that brings, we feel surprisingly, mostly, at peace.

 

We've sat in waiting rooms before.  We've released control of our girl again and again.  We've done IVs and antibiotics.  We've walked into hospitals and we've walked back out.  It's less scary now. 

 

This surgery, though it will be hard on Evie, is a fairly common neurosurgery.  We feel confident in our neurosurgeon and more confident in our God of miracles.  He has a tract record of them. 

 

The recovery is a 2-5 day hospital stay where she will have to remain laying flat.  She'll then be prescribed with time to be flat at home as well. 

 

Prayer Requests:

1.  Safe, no complications, surgery

2.  Wisdom and gentleness of all medical staff

3.  Minimum hospital stay

4.  Release from fear/pain for Evie

5.  For the hearts of her siblings who worry and make sacrifices

 

 

We were informed of Evie's condition during her first hospital stay in December.  At that point, we were told that she has VACTREL association, or a series of related conditions, of which she has three.  

 

 VACTREL

abnormalities of vertebrae (V)

 anus (A)

 cardiovascular tree (C)

trachea (T)

esophagus (E)

renal system (R)

 limb defects (L)

 

 

 

Tethered Cord Explained:

 

      In the case of tethered spinal cord syndrome, a child's spinal cord is abnormally attached to the tissues around the spine (most commonly, at the base of spine). As a result, the spinal cord can’t move freely within the spinal canal.  This abnormal attachment is associated with progressive stretching and increased tension of the spinal cord as a child ages, potentially resulting in a variety of neurological and other symptoms, including motility.   

We are a thousand times ready to have this behind us.   At the same time, it is before us, so we'll face it, pray endlessly, try to find some joy, try to love well, connect with medical staff, release control and rest in the new trust that has developed in us. 

 

But when it is behind us, summer is game on!