Alex and Maddy

Alex and Maddy

Tuesday, January 11, 2011

The Big Day

Tomorrow is the day that we have been planning for weeks. Alex will be under anesthesia most of the day. The plan is to go to the OR around 9:00. Dr. Tsao, our surgeon, will place a new port a cath in Alex's chest. Then the ENT will come in and clean out a ton of impacted wax in Alex's ears. From there he will be moved to the MRI suite to an MRI of his entire spine and an SSEP which will both test if there is any change in his syrinx (fluid in his spinal cord). The procedures will take a minimum of 6 hours, but more likely close to 8 hours. There was quite a bit of discussion about whether or not to do a liver biopsy. The decision was that we wouldn't gain any new information from the biopsy so we won't be doing that.

Alex has continued to do okay the last few days. He has had some stomach pain and leaking around his tube since starting the sugar water. He has continued to enjoy his time with his OT and child life. We have also picked up school again after almost a week off. Bruce came down briefly on Sunday and brought Alex's schoolwork and a few toys he wanted.

Mimi was supposed to fly in again today to be with us for the surgery and the following days. Unfortunately the snow storm on the east coast deferred those plans. The airports in NC cancelled all flights today and everything is sold out for tomorrow. So Mimi will come on Thursday. Alex and I cannot wait to see Mimi.

I will do my best to update throughout the day tomorrow.


  1. We've never met but I have a son with Leighs Syndrome and I know how hard it is to be stuck in a Hospital and to see our kids suffer. Dr Koenig is my sons doc also... I will b at the Medical Center tomorrow from 8 until 1--- if there is anything I can do for u, call me my number is 979-484-6032 my name is Veronica and my sons name is Devin. Take care and I will b praying for Alex....

  2. Alex will be wrapped in my thoughts tomorrow. Please let us know if there is anything we can do from afar.