Tuesday, April 29

A good one!

Let’s chalk up today as a good one – PTL!  Jackie had nice long cat naps all night.  I think his time in the wheelchair on Monday tired him out.

As with the start of any new week in the hospital, it was a busy day.  Jackie was up early and started his day with a bath, morning meds and trach care.  Next up was the visit from the Neurosurgery team.  Once again they were happy with Jackie’s progress.  We will continue to stay the course and let the antibiotics completely wipe out Jackie’s infections.

The skin care team stopped in and took a look at Jackie’s body.  They recommend skin care tips to ensure bed ridden patients avoid skin break down.

Julie from OT stopped by and we talked through the plan for Jackie.  First, we sat him almost in a sitting position in bed and Jim shaved his face and neck.  He was sporting Elvis-like sideburns and a small beard.  It was starting to get itchy so it had to go.  One less thing to itch is best right now.  As soon as Jim was done, Ellen from ST came by.  She brought a special treat for Jackie.  He enjoyed a couple small spoonfuls of chocolate pudding.  He first licked some off his lips and then fed himself a couple small spoonfuls.  He seemed to enjoy the entire experience and I’m sure started feeling like he was actually getting better.

Julie from OT used her lunch break to go to the 5 Below store with me.  Jackie has been keeping his hands busy with assorted stress balls, but was in the need of something different.  We were able to find a bunch of things that should keep his mind and hands busy for a while. Of course I had to purchase a small Flyers tote to keep everything organized and clean.

Jackie had one more PT/OT session.  He sat upright with assistance on the side of the gravity table and exercised his torso and his neck.  He also did band exercises with his arms.  His left side is noticeably weaker than his right.  He then moved back to bed and played Connect 4.  He not only remembered how to play but also used some strategy to win.  By the end of the session Jackie was consistently using the OK hand gesture with Julie.

The rest of the day has been quiet.  He still wants to itch his head and pull at his trach, but that behavior has now become expected for each day. Grandma and Grandpa were here and noticed big improvements.  They also watched Jackie brush his teeth, tongue and apply chap stick.  All things we have been working on.  He likes to wear the plastic nursing gloves when he does his mouth care.

I must admit, yesterday was a rough one for me.  I’m not sure if the lack of sleep caught up with me or if the reality of everything finally kicked in.  Maybe it was both.  I have been trying to stay positive and focus on the future, but yesterday I got stuck in the quick sand of the present.  Having a day like today has put my focus back where it needs to be.

Your positive thoughts, prayers and support continue to fuel our hearts.  Thank you for everything.