Wednesday, May 7

Tears and Toughness

Jackie did not have as good a night as he has been. He had a decent amount of sleep, just not as restful as in nights past.  When he woke up this morning he looked at Jim and I and started to cry.  He is more aware now than ever before, so I’m sure he is processing all the  medical conversions that he hears and has pieced things together.  We continually reassure him that he is through the toughest surgeries, is doing great and that he will be ok.

Our Neurosurgery team stopped by and confirmed that surgery is scheduled for early Thursday afternoon.  They plan to insert a shunt to help Jackie’s body drain the excess fluid from his brain.  This has been a constant struggle from the beginning and we have given Jackie’s body enough time to do this on its own and it hasn’t.  Adjustments to the amount of fluid drained by the shunt may need to be made.  Our Neuro docs will watch this even after we are released to go to Magee.

In preparation for surgery Jackie had a CAT scan and a chest X-ray completed.

The morning continued with the boys ESPN fix.  I must admit, I like watching it as well.  We then put Jackie’s speaking valve on and got to work.  Ellen, ST, stopped by after we had started and as a whole Jackie ended up eating almost the entire cup of pudding, ate many ice chips and even took his first sips of water and apple juice since the end of February.  PTL. ST scheduled Jackie for a swallow test on Friday.  He had a similar test at Geisinger, but since it has been a while ST felt it best to repeat it.

Early in the afternoon the PT team worked with Jackie.  They moved him from bed to the gravity table and did some stretching exercises.  They also utilized his nerf basketball net suspended from the hoisting device to help make the stretching more interesting.  We were unable to get Jackie to throw the ball again today.

We finished up the night with some ice chips and Skyping with Lindsay and Florent. It is now early in the morning on Thursday and Jackie has been restless all night.  His back seems to be bothering him and his head is an endless distraction that constantly itches.  I’m not sure if his pending surgery is also on his mind.  It will be so nice to be out of the hospital and in an environment where sleeping is more comfortable for him.

Jackie is hanging tough.  I can’t imagine going through everything he has endured and faces in the future.  Thanks for sending your positive thoughts and prayers to Jackie as he continues to tackle each day with determination and strength.

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