Tuesday, May 27


Need I say anything else?  After months of waiting, the trach has finally been removed!  PTL!  Talk about a huge milestone.  We celebrated with balloons and lots of Hershey candy.  Jackie enjoyed the York Peppermint Patties, his only approved candy item.  We also hung a poster on Jackie’s door decorated with old trach paraphernalia.  The post trach healing will take about a week or two.  Jackie’s voice will be softer for a couple days and then should get back to normal.

Jackie’s day started out with breakfast and then PT.  Erin had to go to another facility later in the day so we snuck in a session with her before she had to go.  She helped Jackie practice wheelchair transfers in his room and then we went to the gym.  Some of Jackie’s muscles remain very tight.  Erin used heat to loosen them up and then it was time for a stroll.  Erin wraps an ace bandage around Jackie’s left ankle and foot in a way that is primes it for walking.  When Jackie’s body is aligned correctly, the left leg should just swing into a step.  Jackie’s head and torso strength still need work.  If the torso and head are straight, which is hard for Jackie, then the walk is efficient and goes well.  Walking with help is absolutely exhausting for Jackie.

We moved right to speech therapy.  Jackie continues to amaze me with his answers to knowledge based questions.  We still have a long way to go, but we seem to be starting with a good foundation.  Every morning we have started to review the calendar with him.  We review what day it is, what month and year it is and what season we are in.  For the longest time his answer to what month we are in was February, which makes sense considering he probably does not remember that much since then.

We were a couple  minutes into his speech session when the Respiratory Therapy supervisor came into Jackie’s room to remove the trach.  That timing was perfect as Becca could help Jackie with post trach removal speech differences.  Jackie actually tolerated the procedure well.  Tough young man, don’t need to say anything more.

We got Jackie back in bed and he rested but did not nap, after all it was Trach Out Tuesday and we needed to party.  Staffers stopped in throughout the day for a treat and to give Jackie their warm congratulatory salutations.  We were back up for lunch and then it was time for OT.  Paula was at another building so Jackie had his session with a different therapist who had assisted Paula in the past.  More transfers were practiced, stretches were done and Jackie also worked on throwing small items into a bin from the assisted sitting position.  We headed back to the room and Jackie went right to bed.  He was tired.  He took a well deserved nap.  Jim ran out to get an electric razor.  The last time Jackie was shaved was in the hospital and he was due.  We figured we would wait until the trach was out because it would be easier.

It was time to get up once again and in the wheelchair for dinner.  About halfway through Jackie said he wanted to go back to bed.  He finished almost all of his meal and then we moved to the community room.  That did not last long as more people came into the room and it got loud.  We went back to Jackie’s room and Jim shaved him.  Right after that we moved Jackie to the shower table for a nice warm shower.  Once he was back in bed it did not take long to fall asleep.

Jackie had a huge day and in his terms it was “epic.” Tomorrow is another big day as we have our first follow up appointment with his Neurosurgeon from Jefferson.  We are excited for the doc to see just how far Jackie has come in a little over a week and a half.

We are so grateful to be at Magee, receiving quality care for Jackie.  I am not sure why God chose this path for Jackie but I do know that it feels like he is being watched over by many angels. The miles ahead will continue to be a challenge, but I believe Jackie’s youth and determination will get us to the finish line.

Thanks for your positive thoughts, prayers and support.  Tomorrow is hump day, which used to be a favorite but Trach Out Tuesday may have just taken its place!