Thursday, May 15

Still at Jefferson

Unfortunately, things did not work out to go to Magee today.  The good news is that we are scheduled to go tomorrow sometime in the afternoon.  We had been given a heads up that this may happen, so we had mentally prepared  just in case.

Disappointment aside, we had a good day today.  We started out the day with a work out in the gym.  Jackie sat on the edge of a table that could be elevated to different heights. He went through a series of exercises and was elevated to a standing position. He was asked some OT related questions including card matching. When given three options Jackie immediately knew what year it was but was unsure of the month – understandable considering all he has been through.

Mealtime is still going well.  Jackie’s appetite seems to be increasing every day and his nutrition through his feeding tube has been reduced to nighttime only. PTL.  He is still on a puréed diet, but he just seems to be happy eating anything.   Something I hope his friends and fellow students take to heart when complaining about cafeteria or any food. We let him feed himself but monitor spoonful sizes and continue to check if he is swallowing properly.  A nurse and friend from the NICU stopped by with a frozen creamy mango treat which just hit the spot.  Jackie has been extremely thirsty. He started leaning to the left side of his bed and pointing to something.  His writing confirmed he wanted water.  He did this throughout the night. At one point he wrote water and then H2O underneath it, just so we would totally understand his request.  Our nurse showed  us a thickening powder we could use for water and then Jim gave it to Jackie. He drank the entire cup.   The consistency  of regular water is too thin for  Jackie  at this point.  To us it would taste horrible, to Jackie, who drinks water all the time, it was wonderful.

We were sitting in the room after a very late lunch when Leela showed up at the door. She is the Shelty therapy dog that visited us once before.  At the same time the OT/PT team stopped by and had some time to take Jackie to the gym for a second session. Jackie was moved to the wheelchair, he put on some gloves, and was able to pet Leela out in the hall on the way to the gym.  It was a wonderfully therapeutic moment.

Jackie sat on the same table at the gym and did some torso and neck exercises.  It is amazing how much stronger his neck has become just in the last three days.  We can’t thank the therapy teams enough for working with Jackie to get him as far along as possible before heading to Magee.

It has been 44 days since our first and only night at Magee and a cumulative total of 82 days in the hospital. To say the least, we are all ready for the next phase of recovery.  Even though this last hospital stay was a huge set back, Jackie is now much stronger than he was the first time we went to Magee. There is still much work ahead, but I feel Jackie is in a better condition now to handle it.

Thank you for praying for Jackie and for all the support you have shown.  It continues to fuel our spirits and keeps us pushing forward.