Friday, May 16

Magee at last

We started the morning with hopes that this would be the day we made it back to Magee. So as not to be disappointed, we mentally approached the day like any other day at the hospital. Jackie slept fairly well Thursday night so was waking up somewhat rested.

Julie from the OT/PT team came by at 8am to pick up Jackie and take him to the gym.  Minus the discomfort and frustration of wearing his helmet, Jackie seemed ready for the workout.  When we got to the gym, Kris and Beth were waiting for us and we headed straight to the bars for a stroll. With support from the therapists, Jackie made it down the short walkway twice.  PTL!  I can tell it is a struggle and most likely painful for him, but he seems determined to get moving again.  We continue to work on having Jackie release the ball to throw it.  After talking with the docs at Magee,  it is a basic instinct to hold on to objects, that is part of the reason he is not throwing the ball.  His brain will need to be retrained with this motor skill.  As motivation, we have told Jackie that as soon as he throws the ball, he can order a new pair of Oakley sunglasses and have them shipped here.  The therapists at Jefferson have also agreed to pitch in some funds when this happens.  Jackie is really trying and I know at some point will be looking good sporting his new shades.

We headed back to the room after the session and since his breakfast tray had already been delivered, we decided to try to have Jackie eat from the wheelchair.  The meal went very well with Jackie sitting up like he normally would eat, and then was hoisted back in bed soon after he was finished.

He rested for some of the morning and then proceeded to eat many ice chips.  I know the one thing Jackie really wants is to just drink a cold glass of water, but that is not something he is allowed to do.  Chewing and swallowing many ice chips is the closet he is going to get to satisfying that craving for now.

We kept watching the clock as we were told an ambulance would be there to pick up Jackie at 12:30pm.  Not long after that time we were on our way to Magee.  Jackie’s first ride from Danville took a little over 2.5 hours to get here.  The short mile trip from Jefferson to Magee was wonderful.  When we got here, everyone was ready for us.  We saw many different staffers each with their own specialties.  His evaluations guided next steps.  His mattress was switched out for one that would relieve the most pressure on his body, especially the boney spots that are unfortunately prominent all over his body.  He was even given special socks that help with heel protection.  He had his first puréed meal at Magee and made it to the clean plate club with his dessert being a cup of ice cubes.  The respiratory therapy team is already taking steps toward removing Jackie’s trach.  He started a small cap study before he went to bed and will continue the study over the weekend.  If he passes we can move on to the final steps for removal. The capping process basically closes off the trach airway and is a test to see if Jackie’s oxygenation levels stay where they need to with it closed.  It is also a gauge to see how he handles going back to the normal way of breathing through only his mouth and his nose.  So far so good, this is not an overnight process but we are heading in the right direction.  (That definitely deserves another PTL!)

Even though the regular therapy staff is off for the weekend, Jackie will still be evaluated by the PT, OT and ST teams tomorrow morning.  His new wheelchair is already in his room with special padding to protect his body.  Some of his personal items that were stored here for us have been put away in his drawers and tomorrow morning will most likely be the first time in a long time that he will be wearing something other than a hospital gown.

I cannot tell you how good it feels to finally be here again starting this new leg of the marathon with Jackie.  He will need to continue to be strong as the workouts will be challenging and exhausting.  But I know Jackie is up for it and we will keep positively pushing him in the right direction.

Once we get settled in at Magee, we should be getting a better feel for when it would be best for visitors.  From initial conversations with the staff, it looks like at the beginning Jackie will be exhausted during the week days and will need rest week nights.  Weekends may be the best time for visits, but we will need to make sure they are shorter in length and somewhat limited.  Please get in touch with either Jim or I first before making the trek to Philly. Some of his extended family have been waiting to see him for a while so may be making their visits first.

A special thanks goes out to all of the Jefferson staff for taking such good care of Jackie while we were there.  We have been so blessed in so many ways along this journey.  Please know all of your support and prayers are appreciated more than you will ever know.