Tonight we got some heartbreaking news. We have been waiting for the last couple of weeks for our spinal specialist from Shriners and the neurosurgeon at OHSU to connect about Josiah's recent CT Scan and urodynamic study. This evening our Spinal Specialist called and he feels that Josiah's back is at a place where we have no more margin, things have not changed (improved) and he is not comfortable waiting until we have a crisis to address the problems in Josiah's back.
He is planning to meet and discuss an intervention and care plan with our neurosurgeon as well as with two of his other colleagues that specialize in spinal abnormalities. He told us to prepare for a surgery in 3-4 months. The basic plan is to do what's called a "internal fixation" of his lower spine area to correct his sacrum which is not normal (nerve roots exposed, no proper bone coverage there), as well as address the abnormal flexation in his pelvis which could potentially cause his back to collapse and pinch the nerve endings of his spinal cord. This plan is tentative and our doctor is planning multiple consults with other specialists before the care plan is finalized because Josiah's abnormalities are so rare. We will meet with our doctors sometime in the next month once they have determined a course of action.
So... as you can imagine, we feel like we got the wind knocked out of us tonight. It feels like the direction is certain, and yet nothing is completely certain about this. What's uncomfortable about this process is that its not like having your appendix out where the procedure has been done countless times with proven outcomes - these surgeries are more rare and the abnormalities tend to be specific to the child which makes it hard to compare one case to another. On one hand I am glad we know about it and that this isn't being generated by an emergency because of some symptom we are witnessing from Josiah-- on the other hand I look ahead at our summer and the anxiety of waiting and thinking about this for four months and it just sits in my stomach like a rock. I hate it that Josiah has to go through anything like this at all. Its really hard to think about our little guy having any kind of potentially life altering surgery.
We had a family meeting tonight to talk about this and to pray. We all shed some tears together. We are still believing God for a miracle in Josiah's body. Thank you for your continued prayers and support during this time. Our trust is in the Lord, Maker of heaven and earth, and Maker of our precious Josiah. We will post more as we know more.
Shawn & Dana
Posted by Shawn Klinkner on Monday, April 12