Tuesday, June 16, 2015

and now we wait on the little legs... and possibly wait and wait and hope and hope

Shea, Tues 16th

Shea came out of surgery at about 4 am.  He had a very painful hour until the morphine finally caught up with his pain and anxiety... but now he's comfortable when sleeping.  He still has significant pain when he's awake...but for most of the day his body has been letting him sleep.

Structurally the decompression was a success.  It was a severe compression, and it has been present too long.  It is unsure which came first the chicken or the egg... but the cage shifted and also there was abnormal cartilage in the vertebral canal above the removed vertebrae that was now resting on the cord.  One of these issues could have caused the other issue when alignment shifted, or vice versa.

Today he is to be free of the brace, and on bed rest rotating from left to right every 2 hours, bed flat, and on ice chips.

THE PROGNOSIS:  what should we expect about return function of his legs?  We are told that because of the severity and time of the compression we have a long road in front of us.  We may get his baseline strength in a few weeks, months, or a year...or we may be looking at a more permanent type of loss.  This will now be monitored and treated as a spinal cord injury that needs to try to heal.

The good news is that we have seen a little improvement in his left quad, he can move the knee jnt and inch or so with lots of concentration and effort.  ( we had only a small quad "quiver" on the
left before decompression )  Also on the R quad we now see the quiver at times when really working hard at it... and before decompression there was nothing at all.

I feel much better now that Dr Sanders is back in town and will be paying close attention to each detail.  I also feel relieved that I took a stand and "dismissed" one staff member from our case who i feel was a key component of not having my concerns addressed and not taking our symptoms seriously, not pursuing diagnostics that i requested.

Shea may be allowed to put the brace on tomorrow and attempt to sit up.  For now his little body is medically stable.  Once we sit in the near future we will see if there is any resolution of the awful vertigo issues, to see if that was related in some way to csf imbalance from the compression.

The team and i have also come to an understanding that shea will stay admitted to some part of the hospital, if we feel he should, until he can tolerate upright sitting for a reasonable amount of time. This will make the transition home more safe and manageable. ( unlike our weekend at home that we just experienced.)

Today has been his quiet rest day, with lots of sleeping allowed.  His work has been his position changes and his breathing exercises.  Tomorrow will bring new goals and hopes.

PRAY FOR:  the cord to rest, heal, calm and return to allowing the nerve conduction to flow through it.


  1. Tears for your little boy this morning. Just prayed out loud for Shea's healing. <3