Monday, April 21

Hugs and stitches

Last night was a peaceful one for the most part, filled with long cat naps and not much restlessness. Jackie’s bath was first up for the day with the regular nursing routines to follow.

The Neuro docs stopped by and decided to hold off on putting in the shunt at least for now. The OR had been tentatively reserved for tomorrow. We are still hoping Jackie’s body will begin to regulate the extra fluid on its own. If not, surgery could still happen later this week.  A complication to this process is the fact that Jackie’s Lumbar drain continues to leak on and off. In fact more stitches had to be put in today to stop yet another leak.  The hope is to keep the drain in for a couple more days.  Talking to one of the residents, stitching the existing drain is better than pulling it out and inserting a new one.

In our opinion, Jackie’s neuro function is now back to where it was when we left Geisinger.  PTL. We have started to video our sessions with him since he will not do anything when the docs or nurses ask him.  This way we can show them.  Our nurse today asked Jackie for a thumbs up.  He immediately gave her a thumbs down.  I truly believe he is so sick of doing these elementary commands that he responded in a way that she would stop asking him questions.

Jim and I thought we would take the opportunity to work with Jackie while his neuro function was high.  We put on his speaking valve and worked on Jackie’s tongue strength.  We held a lollipop to his lips and he moved his tongue forward to lick it.  This was something he did just prior to leaving Geisinger.  Lenora  our ST from Geisinger would be proud of Jackie!  He also ate a couple ice chips.  We worked on getting Jackie to make some sounds, but were unsuccessful.  We also had Jackie work with a pen and paper.  This is definitely an area that will need some work, but some of his letters were legible.  He read a short sentence and acted on it and worked on numbers as well.  We also had Jackie laughing throughout the day.

The best part of the day was when I was sitting close to Jackie and he reached out one arm and touched me and then reached out the  other arm.  I jokingly asked if he wanted a hug and reached down and hugged him, the next thing I knew both of his arms were gently hugging me back.  I headed to the window out of his view and cried.  It has been a very long time since I’ve hugged my Jackie.

We just need to get over a hurdle this week and hopefully we will be headed back to Magee soon.

Thanks to all of you for your positive thoughts and prayers.  They will help heal Jackie and keep him strong.