MH SDR updates; Surgery Day and Post Op Days 1-2

7.19.13 Friday Surgery day was long and stressful waiting for 5 hrs from when they took him back to seeing him in recovery. While actual procedure for the laminectomy and Selective dorsal rhizotomy was only 1.5 hrs, it was a lot of time for prep and set up. He did great the surgeon said it went perfect! We were concerned about pain and keeping him flat on his   back and in bed all weekend.  The mayo pain team is amazing he had an epidural placed while still under anesthesia which has been great supplemented by other iv pain meds. He has been comfortable, not too sedated  and really surprised us all with very little crying or wining, which I know I would be doing in his situation.
His main doctor was in the or during surgery and was pleased with the areas of spasticity they were able to identify and then selectively reduce, and feels he should have positive results in the long term. We already are amazed how relaxed his feet and legs feel and look, the stiffness is gone!!!

His epidural was taken out  Sunday morning and his catheter this afternoon. Removal was quick and once he realized this meant freedom and some of his own clothes on he was one happy guy. He is eating and drinking plenty of fluids so for now his iv is discontinued, however its still in his hand in case we need it.  he's now not tethered to the bed. PT has shown us how to lift him supporting his hips and shoulders to ensure his back is not strained while it heals.

We moved him to a special wheelchair and we were allowed time in the playroom, cafe and even outside! Such a relief to us all the 4 walls in his room were starting to close in!!! and there is only so much you can do to occupy a normally very busy 4 year old in bed! He was tired after a couple of hours in the chair and out and about in the hospital and is now napping back in bed, while listening to the pooh bear movie that I know by heart as he has watched it so many times in the past 48 hours!  There are lots of other choices but he chooses Pooh bear movie I guess its just a comfort thing!

 He will move from peds floor to rehab unit on Monday 7.22.13
and start pt! I am sure we will have ups and downs as they get him moving slowly
first rolling, then sitting in his chair and eventually standing and walking
with his walker. Mark is sleeping in his room, while I was at a hotel but moved
to Ronald McDonald house when a room came available. Rmh is great we have not
stayed there before but it's really nice. I will stay the week here and go
home next Sunday or Monday, I'll work during the week and come back down on the
weekends until he does home.

The intensive pt rehab will be for 3 weeks so
hopefully he will be ready to come home around Aug 9. Once we get home he will go to courage
center back to his local PT who we love and see her every week day for physical therapy for 3 months! Then less days per week for the next 6 months, full rehab is 1 year.