Monday, May 5

Back on track

Jackie slept better last night than any night we can remember.  He had catnaps, but they were long with not much awake time in between. We completed all the morning routines and saw our docs.  We will continue to stick with the plan for surgery later in the week and have slightly reduced the amount of spinal fluid that is being drained hourly.

While watching our morning fix of SportsCenter on ESPN, we saw a story on Charlotte Brown, a blind high school pole vaulter from Texas, who has succeeded on and off the track.  It was truly inspirational and hit home as it was someone around Jackie’s age who has overcome a physical challenge.  The story was done by Melissa Isaacson on Apr 23, 2014.  If you have time search for the story on ESPN.  The reason I bring this up is because after watching the story I looked at Jackie and said that it almost made me cry.  Immediately Jackie cried, silently but hard.  It was the first time we saw this emotion and made it more difficult for me to hold it together emotionally.  I truly believe he is becoming aware of the severity of his condition and is trying to deal with it.

We continue to work with Jackie on having him complete his mouth care. Each day he seems to be using his tongue a little more.  PTL.  I know this seems like such a small thing but is actually a huge step toward recovery.

We were listening to some of his music and Kristin his nurse and I felt the need to do some small dance moves.  Kristin had a great idea and had Jackie snap to the beat.  It was awesome! Later in the afternoon I played my uke and we all jammed again.

We continue to redirect Jackie’s hand movements 24/7.  He is quick and strong and within a second can have his hand on his head.  Even though it must itch so bad, he cannot touch it.  He also continues to grab for his trach, IVs, etc.  It creates very little down time for us but I mentioned this before, is a good thing as he is thinking and moving!  He has started to pull off the O2 tubing connected to his trach.  The O2 is set at the lowest level and basically provides humidified room air to his trach.  We joke and say we are at an Oxygen bar and he points the tubing at each of us for a shot of O2.  It makes all of us laugh and helps keep things positive.

Jackie’s PT session was probably the longest to date and he worked really hard.  Prior to the start of the session Kris asked Jackie if his head and his back hurt.  He confirmed that they did with two thumbs up. He also pointed to the Lumbar drain as the source of the pain in his back.  It is important for the therapists to know this when working with him.  Kris first worked on some tight muscles in his left leg while in bed.  Then they sat him up and continued to work on his head and neck muscles.  This may not sound like much, but even sitting on the side of the bed with support is exhausting for Jackie, especially since he still cannot hold up his head.  The session continued and he was hoisted into the wheelchair.  We took him to the walk bridge again and after a short time he was ready to head back to bed.

While on our walk and several times in bed I reached in for a hug.  Every time Jackie’s right arm reached around me and he rubbed my back.  I could stay in those moments forever.

We will not have an official speech session until Wednesday, so Jim and I continue to work with him.  After eating some spoonfuls of pudding and ice chips, we thought we heard Jackie vocalize an mmm sound.  Another thing that seems almost insignificant but in actuality huge in terms of progress.

Having a child suffer a critical injury is hard, watching them fight through pain and frustration is also hard.  Staying positive, trying to make things fun and focusing day by day is key.  As much as this is taking quality time for Jim and I to a whole new level, I don’t know what I would do without him.  I think we help level set each other and provide support as well.  It will be so nice to have our family of four together this coming weekend.  We are so excited to see Lindsay and of course Florent.

Each day celebrate the little things, try to have fun whenever possible and hug often. Thank you for continually keeping Jackie in your thoughts and prayers.

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