Tuesday, May 20

A good fit

Besides short periods of being awake due to nursing or respiratory visits or positional turns, Jackie is having peaceful nights.  We are all getting used to the new routine and surroundings.  All of our interactions with the staff have been positive and the facility itself has much to offer in terms of rehabilitation equipment and common areas for a change of scenery.  Both the second and sixth floors have outdoor terraces that will allow supervised escapes from his unit on the fourth floor.  Overall our initial gut feeling about Magee has been correct and our choice of rehabs appears to be a good fit for Jackie.

Today marked the second day of therapy sessions.  Jackie made it through all of them but was bothered the entire time by his helmet.  Both Jefferson and Magee had attempted to correct the fit with padding, but to no avail until the last session today.

As per the schedule, speech was the first session of the day. The goal of the session was to try a food that was not puréed to see if Jackie could properly swallow it.  Getting to this point was challenging as Jackie’s focus was on reaching for his trach and pulling off his helmet.  Becca did a great job of getting Jackie back on track and by the end of the session he successfully tried eating crumbled chocolate chip cookies mixed with pudding.  A positive step in the right direction.  Another swallow test will be happening soon in hopes Jackie can advance past the puréed diet to a ground diet…baby steps.

Next up was PT.  Erin picked us up and we headed to the gym.  From our first session with her we could tell she was a genuinely caring person.  Jackie had been complaining about lower back pain and was still bothered by his helmet.  A positive for Jackie is that when he is on the mat in the gym he can take off his helmet.  Many muscle groups were stretched including the muscles on the right side of Jackie’s neck. Despite the fatigue and pain, Jackie continues to be strong and is working hard.  At the end of the session and with the assistance of two of the therapists, Jackie was elevated to the standing position.  Even with help, it has to feel good to be upright and standing tall.

After eating a good lunch, Jackie went back to bed to relieve some of the pressures of the wheelchair from his body. In about an hour he was lifted back out and was heading to OT in the gym.  Today was our first day to work with Paula, we had heard great things about her and we found them all to be true.  Jackie seemed to connect well with her and she had a natural ability of keeping him focused.  She did different stretches with him and also fitted him with a new helmet – hallelujah!  We had no idea how heavy his other helmet was until we compared it with the new one.  Jackie still does not love it, but he is tolerating it so much better as it will continue to be a necessity until his surgery later this summer.  Erin stopped by and together they decided on a new back for his wheelchair and adjusted his head rest.  The net result – a good fit for Jackie.

Jackie headed back to bed and was up again in an hour and a half for dinner.  He continues to eat the double servings he is getting which is so important as he needs both the nutrition and the calories in order to gain weight.

Not long after dinner he was back in bed for the duration of the day.  Our case manager stopped by and we had a beneficial conversation with her.  She will help us with many things while we are at Magee, everything from weekly team updates to future discharge planning.

It was another good day at Magee, filled with many things that add up to a good fit for Jackie.  PTL.