Wednesday, February 3, 2016

Will we or won't we?

Yesterday Mason had the first appointment in the process of creating his night time sleeping brace for his scoliosis.  The first step is simply making a cast of his body from under the shoulders to his hips. This picture is right before they start wrapping him in a cast.  They wrapped him in cast material and while it was still flexible they pushed on his shoulder and hip to correct the curve of his spine.  He stayed in that position while the cast material hardened.  Then they cut off the cast.  It will be used to make a mold of Mason's body and to create the custom brace.  In a few weeks we'll go back for a fitting.

While we were there Mason got to see a brace like the one he'll be getting.  It looks okay but I don't know that he'll be able to sit up in it and climb out of his bed each morning when he wakes up.  I'm not even sure he'll be able to roll over in it.  We shall see.

Yesterday morning I also called our neurosurgeon's office to see what Dr. G's plan was now that the urodynamics (bladder study) was finished.  The nurse practitioner called me yesterday afternoon to chat about the symptoms we are seeing.  She promised to call me after she went over all of it with Dr. G, but that since there had been no bladder changes she wouldn't be surprised if we were done for now and would not pursue any more testing until the bladder begins to show changes.

She called me back at 9:30pm.  Dr. G wants to examine Mason before the scheduled foot surgery a week from this Friday.  His reasoning makes sense.  If the foot contracture Mason is having surgery to correct is being caused by a tethered spinal cord (instead of just randomly happening) then doing the foot surgery before doing a tethered cord release means the surgery will be wasted.  His foot will simply re-contract and need a repeat of the surgery because the underlying cause (tethered cord) had not been addressed. 

Dr. G's office will call today to schedule that exam.  There are two main possibilities that will come out of that exam.
  1. He will clear Mason to go ahead and have foot surgery if he feels that Mason does not need a tethered cord surgery yet.
  2. He will cancel Mason's foot surgery and schedule a sedated MRI of Mason's brain and spine instead.  This would be the final imaging done before scheduling a spinal cord detethering.  The foot surgery would get bumped to a later month after a detethering was complete. 
  3. Or after cancelling the foot surgery and doing the MRI the imaging could come back and the neurosurgeon could decide to wait and we would reschedule the foot surgery - but this is the least likely.
As always, things are never certain around here.  That is probably one of the most challenging parts of having a child with complex medical needs!  It takes a team of doctors to decide what is going on and what needs treated first, second, and third, as well as how to treat each issue without impacting other issues negatively.

In other news, Mason had his first appointment with his physical therapist on Monday.  We went over the issues Mason is dealing with and our goals, gave him a good workout, and will go back weekly for the foreseeable future.

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