Thursday, April 17

Jackie slept on and off the majority of the night. The string of cat naps seemed to last longer in duration than the previous night.  We are hoping this trend continues.

We have tried to start introducing a routine in the morning.  First up is the visit from the docs around 6am.  Our doc was heading into surgery so the visit was quick and confirmed we were to stay the course and continue to drain spinal fluid each hour today.  Next up was  Sports Center on ESPN which includes the Top Ten sports highlights from the previous day.   In most cases Jackie is positioned in bed in a way that he can see the TV.  If he isn’t, we can tell he is listening to the sportscast.  We also have started putting his speaking valve on every morning.  Even if we don’t work on any speech or swallowing exercises, it is good for him to get used to the sensation of the valve.  It allows air to come in but not out.  This is all part of the process to get him ready for the trach to be removed.  We are hoping to reach this milestone when we get back to Magee.

We have also introduced the use of the iPad.  We flip through pictures in hopes of refreshing his memory.  His motor skills are not quite refined enough to move the screen from image to image, but he is trying.  There is also a simple game app that Jackie can play to a certain point.  He moves and jumps a small figure forward and over obstacles to get to the finish line.  He doesn’t play this long as we feel he gets frustrated, but it seems like something he enjoys.  This is nothing compared to the XBox games he used to play, but you have to start somewhere.  Jim also downloaded a James Bond movie to watch.  They are watching it for small periods of time.

A PT/OT session was next.  Neck and core strength exercises were worked on at bedside.  It is amazing, even with all of Jackie’s weight loss, which is significant, he still has great strength in his arms.  He continually moves his legs, which can pose challenges at times especially during some of the exercises, but this is a good problem to have!  He was then moved to the chair. He had a different wheel chair today which provided better neck support.  The team decided to take him for a little ride.  We wheeled him through the physical therapy gym area which is just down the hallway on the same floor that we are on, then wheeled him a couple more feet from the gym to a glassed in walkway.  It gave Jackie the chance to see the city and I truly believe it gave him hope that he was starting to get better after being in a hospital bed for so long.  PTL.  For those of you who know me, I admit I am somewhat of a germ-a-phobe. Our venture out of Jackie’s room today included zero close interaction with people and was about the same distance from his room as any of the trips for a CAT scan.  The big difference was that he was sitting up vs laying flat. After returning to the room he stayed in the chair for a while before he was moved back to bed.  He was exhausted.

We did not see the ST team, hopefully the will stop by tomorrow.

I have a feeling the Lumbar drain will be staying in for a couple more days.  All of us including the nurses and OT/PT staff will be glad when it can be removed.  We have to constantly ensure the site where the drain is inserted is not leaking, stays clean and that the drain tubing is not pulled out of place.

We keep testing that virtue of patience and pray that we will soon be out  of the hospital and back at Magee.  Our docs, nursing and rehab staff at Jefferson have been great and I’m sure they all wish we were out of here as well.

The next couple days will determine the length of time we stay at Jefferson.  Thanks for your prayers for healing, strength and patience.