Saturday, August 16

A Needed Visit

Breakfast started out slow.  Jackie did not seem interested in eating or swallowing at first.  Every bite was a struggle but we were able to get him to eat a small portion of his breakfast and take his morning meds.  Amy who will be working with Jackie next week while Becca is on vacation came in for a Saturday session.  She spent the first half of the session helping Jackie eat more of his breakfast, then they went to the second floor terrace for some fresh air.  It was a beautiful day in the city.

As soon as speech was over it was time for PT.  Jackie has been scheduled for therapies all weekend since he missed some days last week and will miss a session due to his doc appt on Monday.  Erin was working this weekend.  It was great to have her work with Jackie.   She knows him very well and always incorporates new things in her sessions.  Since Jackie’s muscles still get tight she stretched many muscle groups.  This is so important and is another step toward trying to prevent muscle spasms.  They ended the session using a tool that Pete, one of the PT students designed.  It was an NFL game that incorporates many elements of PT.  Jackie enjoyed playing and did very well.

Needless to say he was exhausted.  He came back to the room and took a nap. His next session, OT, was scheduled for 2pm.  Based on how long it takes to eat, this did not leave much time to get everything done.  He slept well, woke up and had a small lunch.  Nikki came to get him and took him to the gym. Jim and I were waiting for my sisters and brother-in-law to arrive with a most special visitor – Jovie!  As soon as they got here we took her into the gym.  Fortunately Jackie was the only one getting therapy at the time so we were able to have her help with the session.  She laid beside him while he was getting stretched and she sat on the floor and helped with sitting balance exercises.  It was wonderful. PTL

We came back to the room and warmed up some of his lunch.  It is so important to get as much food and drink in him as we can.  Jovie is so good.  She laid peacefully by his side as he ate a little more.  Then she laid beside him during his nap, looking up at his face occasionally to make sure he was ok.  Jackie fell asleep with his hand touching her fur.  I can’t remember the last time I saw such a peaceful look on his face.

When he woke up it was time to try to get another IV in place.  After multiple attempts and the use of a vein finder, we stopped the process.  There are just no more veins near the top of the surface to use.  Jackie’s body as well as his spirit needs a break.  I took Jovie outside during this process.  Jim is much better than I am during these tries and we felt it best to get Jovie out of the room.  We will continue to closely watch Jackie’s fluid intake and will review all of this with his neurosurgeon on Monday.

Next up was dinner.  My sisters and brother-in-law were back from doing some laundry and running some errands for us.  Uncle Jody stepped in and helped with dinner.  Since Jackie had been so tired we let him eat in bed.  Jackie ate very well.  PTL. He seemed to enjoy having Uncle Jody assist with the meal.  It was getting late by the time he was finished.  We had to once again say goodbye to Jovie.  We walked them down to the lobby so we could squeeze every last minute of time with her.  Jim and Jackie came back up to the room and I walked her to the car.  It was a great visit for all of us!

When I got back to the room the boys were watching Little League baseball and eating water ice.  Jim fed him as much as he could to help with fluid intake.  It didn’t take long for Jackie to tucker out.  We got him in bed and he fell asleep quickly.  I truly believe Jovie’s visit gave Jackie a glimpse of home and I’m hoping that will help fuel him until we get there.

Tomorrow is another day full of therapies.  We continue to go day by day and infuse as much positivity as we can.  I won’t lie, some days are easier than others.  It has been hard to see what Jackie is capable of and then witness such a decline.  We know that this will turn around and Jim and I continue to push each other when frustration sets in.  It is so important to constantly motivate Jackie even when the days are hard.

We are blessed in so many ways through the love of our family, friends and followers of this blog.  Thanks for continuing on this marathon with Jackie.  We will get to the finish line and it will be sweet!