Thursday, September 18

Small Victories

Jackie slept much better last night. He also tolerated his nutrition well throughout the night.  PTL. When he woke he was more verbal than he has been in a long time.  Right before we helped him get dressed he straightened his right leg, then to our astonishment we swear he purposefully straightened his left leg and crossed it over his right leg.  PTL. We continue to celebrate small victories and look forward to achieving small milestones that will eventually add up to the big milestone of getting Jackie through the last mile of this journey of recovery.

Becca is now seeing Jackie at 9am every day.  She had a cafeteria tray brought up so she could work with him on eating breakfast.  The session went well.  PTL. Jackie’s swallowing function is getting faster and more back to normal.  He even ate half of a bowl of oatmeal.  Becca has approved one meal a day for Jackie to eat from the cafeteria.  It is still a restricted diet but is one step in the direction of increasing meals by mouth and reducing tube feeds.  The nutrition team is following Jackie closely and plans to keep him on a high caloric daily nutrition regimen so that he has enough energy for therapy sessions as well as enough nutrition to put on some pounds.  He has lost quite a bit of weight again and it is time to put it back on.

Part of the new game plan for Jackie includes less naps during the day.  This is a lofty goal since Jackie still seems to be tired from his recent hospital stay.  He will need to pull all of the strength he can muster to achieve this. Since PT was an hour away, we kept Jackie in his chair and went out to the second floor terrace for warm sunshine and fresh air.  We reclined him back and he closed his eyes enjoying the simple comfort of sunshine on his face.  It was a beautiful day.

Erin picked him up next and took him to the gym.  She said he had a great workout.  She used the standing table to help get him as upright as possible for as long as possible.  Slowly but surely he is making his way back.

His new OT schedule allows him to take a nap prior to the session, but today Paula was going to see him early. Once again, we kept him in his chair and let him rest there.  He also had some afternoon meds and a bolus of nutrition that was administered through his peg tube.  Before we knew it, Paula came to the room to take Jackie to the gym.  The main goal of the session today was to take photos of the correct sleeping positions for Jackie.  Since he had so many muscle spasms in the hospital, it is important that when he is repositioned in bed every couple hours overnight,  it is done correctly.  Anything to help reduce muscle tightness or spasms is key.

At last, Jackie was able to take a nap.  As soon as Paula got him back to the room he was unlocking his seat belts.  He didn’t need to say a word, it was obvious he needed a break from his chair and a busy day of therapies.

When he woke up we had just enough time for a quick break on the second floor terrace.  Then it was time for a shower and shave.

Jackie was exhausted.  Getting in bed by 7pm may seem way too early for a 19 year old to turn in for the night, but with his new schedule it can’t come soon enough.

The course that lies ahead for Jackie is long and challenging, but the experienced staff at Magee will help guide Jackie, Jim and I through each mile.  Another new day is ahead with opportunities for small victories.  PTL.