Saturday, March 15

Double Duty – Lindsay and Florent split up and joined us for the night shift.  It was not only nice to have company but also great for Jackie to spend some extra time with them.  

Once again he had a fairly peaceful night.  I think he is actually starting to get his nights and days straight.  He is getting strong.  We are constantly bedside to watch and hold his hands so he does not play with his IV or trach tube.  He is also getting curious with his face.  We let him gently explore, but don’t want him to scratch his face or bump his nose. If his hand moves to a certain area we try to scratch it for him as best as we can.

At one of Jackie’s Speech Therapy sessions Lenora showed Jackie sign language for I Love You.  Jackie is familiar with this sign as we use it at home all the time.  She molded his hands for him because he was not able to do it on his own.  At the end of Jim and Lindsay’s shift this morning he made the sign on his own for the very first time. PTL

Jim and I are going to work with Jackie today on the exercises Eric gave us for his arms and legs.  This way he will be ready for PT on Monday.

I was getting ready to post this update when Jackie got sick.  His digestive system seems to be a constant struggle.  Some days are good others bad.  Today is one of those days.  When he gets sick we have to get the Respiratory Therapy team in his room quickly to suction his trach to ensure he did not aspirate anything.  Fortunately he was ok.

Just like Jackie has good and bad days we do too.  I constantly want to turn back the hands of time but know it is impossible.  I definitely have what I like to call my break down moments, but also know it is so important to stay strong and very positive when in the room with Jackie. We have begun  holding conversations with docs and nurses outside the room so he cannot hear us.  Positivity is key!

I always remember every now and then getting an email or having a conversation that would give me a needed reality check.  Every minute of every day is a reality check for us.  Please try to stay positive when your days don’t go the way you planned and never take things for granted.  Laugh at the things that don’t go right and always keep the faith.

Will post again later tonight.