Wednesday, May 28

A day at the docs…literally

Jackie woke up early this morning since he went to bed so early the night before.  We softly chatted since Jim was still sleeping.   After a while we couldn’t help ourselves and we woke him up.  The nurse came in and said that Jackie may be getting a test done and could not eat breakfast, so we decided to have a lazy morning and have Jackie stay in bed for a little longer than usual.  The test ended up being cancelled for the day so Jackie got up and had a late breakfast.  We had to be ready to leave for our follow-up appointment with our Neurosurgeon by 11:45am and were scheduled for Speech therapy at 10am.

Jackie ate a good breakfast and before we knew it, Becca was at the door for Speech.  Since Jackie would be in the chair for a while today, Becca agreed to having her therapy session bedside.  Jackie’s voice is getting a little bit stronger but is not back to normal yet.  If he holds his hand over the bandage where the trach had been inserted, he can speak a little louder.  There is still some healing to be done.

The transport driver was on time and we embarked on our first trip in a wheelchair accessible van.  I rode with Jackie and Jim walked to the appointment.  The ride was very bumpy and was actually a little unnerving.  Jackie’s head was moving around way more than I would like.  At one point I asked the driver to slow down.  We made it there in one piece, but Jackie was complaining about some pain in the back of his head.  I think his helmet was hitting the area where his shunt is located when we were hitting the bumps or turning corners.  I had to think about a way to keep his head more stable for the ride back.

Not long after we got to the waiting room, Jim arrived.  Magee had provided a packed lunch for Jackie,  but we decided to hold off on feeding him because we did not want to be in the middle of eating and get called back into the room.  We did not have to wait long after the actual appointment time to get back in a room.  The Fellow that our doc was working with in the hospital saw us first to go over some basics, then our doc came in.  We had seen our doc almost every morning for 6 weeks while we were at Jefferson. It was nice to see him again. It was also a treat to see his reaction when Jackie spoke.  He had never heard Jackie’s voice or seen him this responsive before. We ran down a list of questions and overall Jackie is progressing in a positive direction.  Some stitches were removed and the setting on Jackie’s shunt was changed.  We will need to report any neuro changes we see back to the doc in the case the setting needs to be adjusted back to where it was. We follow up again at the beginning of July and go from there.  It is too soon to tell when Jackie’s final surgery will be scheduled.

We returned to the waiting room and waited 2 hours until the transport van arrived. Magee does not own the vans, they use a service for transportation of their patients.  That made the day way longer than it should have been for Jackie, he was in the wheelchair for a much longer period of time then he should have been.  Fortunately the transport van going back was larger so Jim could ride with us.  Plus the ride was smoother.  We got back to his room and got him settled in bed for about 45 minutes before getting him out again for dinner.  He was extremely tired.  We got him back in bed as soon as we could.  He will hopefully get some well deserved rest tonight.

The experience today was eye opening.  We were the parents in the waiting room who had the child that everyone was staring at.  We had to rely on others to transport our child and we worked through some of the challenges that go hand in hand with caring for someone in a wheelchair.  I am praying Jackie will be walking in to his next appointment with our doc, but I will never forget what we are experiencing now.  God bless all of the parents of children who face physical and mental challenges.  You do amazing things everyday that very few actually realize and you take parenthood to an entirely different level.

Thanks so much for all the prayers, love and support.