Saturday, May 17

A big, huge, miraculous day

I think Friday night was the best sleep Jackie has had since February.  Whether it was the ambulance ride, the new bed, the lack of leads, the quiet, sheer exhaustion or the fact that he may not have felt hungry or thirsty anymore, it was wonderful.  The Respiratory Therapy team was able to turn off the humidified air by putting on a special attachment to Jackie’s trach that enables his own breath to create natural humidification.  It allowed Jackie to sleep on his left side, another first since February.  PTL

We started the day with the OT team.  Jackie was given a bed bath and was evaluated based on the things he could and could not do.  Tasks like washing himself or putting on his socks.  He is trying hard, but there is much work to be done here.  After the bath, Jackie was hoisted in a similar lift system as the hospital into his wheelchair.  Next up was his ST evaluation.

The ST team accessed Jackie by feeding him breakfast and testing his verbal skills.  His appetite was huge and he ate almost everything on his tray.  His speech was nonexistent.  I was starting to get concerned if Jackie would ever talk again.  He had started mouthing words, but with no audible sound.  Then it happened, Jackie really wanted something during breakfast, Aimee probed him to say what he wanted.  And there it was, as clear as could be the word milk.  I wanted to break down and cry but knew I had to keep it together since Jackie was eating.  By the end of the session he had verbalized the words milk, good, eggs and the big one – Mom.  I could not stop the tears on that one.  Without a doubt this was an answer to prayer, a beautiful gift that was given back to Jackie.  This meant the doorway to communication was now starting to crack open.

Jackie stayed in the wheelchair and headed down the hall to the gym for his PT evaluation.  The goal of the session was the same, to get a baseline report on Jackie’s ability level, this time from a physical perspective.  The team had him do various exercises on a large table, very similar to the one that we used at Jefferson.  While Jackie was laying on the table taking a break, Jim leaned into him and asked him a question.  Moments later Jackie said the word Dad! A very special and unforgettable moment for the boys.  We all cried.

Jackie didn’t say any other words for hours.  After dinner it was time for a shower.  Unlike the rolling PVC table that they used at Select Specialty, Jackie was hoisted into a waterproof wheelchair.  Out of curiosity and the need to learn I assisted.  This was a routine task for the nurse who had much tenure at Magee and it showed.  She knew what she was doing and she was a genuinely caring person.  After we were done we got Jackie back in bed.  He was not only exhausted from three PT sessions but also from getting out of bed to eat in his chair for lunch and dinner.  Before he fell asleep for the night, I felt the need for a hug….big surprise.  I leaned in and Jackie hugged me back.  I told him I loved him and was taken back when I heard the words I love you. I held the hug for as long as I could.  My boy is coming back.

Jackie spoke a couple more words before falling asleep for the night.  It was funny, at one point Jackie said something to Jim.  I was filling out some paperwork and Jackie spotted a bag of snacks across the room.  After Jim had him repeat the words Jackie said Vanilla Wafers.  We laughed, apparently the packaging looked similar to Vanilla Wafer bags.  God is good!

With each day that goes by it continues to be obvious that it takes a special person to be a nurse.  Thanks to all of you who have chosen this as your profession, especially Jackie’s Nana who has finally retired after many years of selfishly caring for others.