Read To Your Children

They told me there would be highs and lows. So I convinced myself I would be able to handle them well.

Every day so far we have seen some new form of progress. Maybe just the tiniest nod of his head, or the slightest effort to kick the balloon.  He even opened a snapchat from Alex saying that he arrived Rome safely! So it's been easy (easy being relative) for us to be on our "highs"

I attribute the lack of lows to the wonderful teams in the ICU, from the nurses, to the respiratory teams, to the residents, to the attendings. The times that are the hardest are when I am alone, not alone in Kyle's room, because I love my alone times with Kyle, but alone in my bed at home at night.

Last night, though, things came crashing down.

Surgery on his shoulder went well.  They felt it was time to move him from ICU to Pediatric Intermediary Care (Peeds). I had been previously cautioned that the move to "step down" would be difficult. The care is different, the ratio is different, the environment is different. So, what I worried about in my head, was going to become reality.

I was still home when Greg said they were getting ready for the big move.

 "Wait, wait!  They can't move him without me being there! I can't walk into an empty room when I get there!  Tell them I'm depressed now.  Tell them I am crying, because it wouldn't be a lie."

I hurried to the hospital in a state of panic that he would not be in our safe place, our home away from home.
When I arrived the room was packed up, belongings in bags and boxes, and Greg just sitting there "waiting".

We were transported down to Peeds and received the biggest welcome.  We were told we had a nice  room and I joked  "Oh! we got the corner suite!"  Our charge nurse made the sweetest "welcome sign" for Kyle's door complete with a motocross bike and rider!  Everyone was super sweet.

I won't go into too much detail, but I will just say if the "ball could be dropped", the "ball was dropped".  To the point where I cried myself to sleep, and where I cried my eyes out when I awoke.

I will tell of the biggest incident only, because through the horror of it, it also gave me something special.

It was 9 PM and still being sleep deprived, I thought I would go to sleep early.  But I enjoy that time of night with Kyle. I've been reading to him, so that's what I thought I would do instead.  That's more important to me than sleeping.  His eyes had been bright for a long while, but as I was reading, I started to see a change in him. His eyes became smaller, but not like he was tired and his face was looking hot.

But I continued reading thinking it was just a little post surgery fever.  Beads of sweat increased, and his look was continuing to change, eyes still small, but suddenly focused on mine.  (Kyle does not usually keep his gaze on me, just like it's not usual for him to listen to my "commands").  I held his hand and asked if he was ok.  He stared into my eyes and the look of distress was overwhelming.  It was a look that for the first time I knew he was really communicating with me.  And because of that communication, I thought to ask him to wiggle his toes if he was in pain.  And to my dismay, he did.

Long story short, no one had thought too give him his pain medication (remember his shoulder surgery?)
If I had not decided to read to him, this poor boy could have possibly gone the whole night in pain.

I am thankful for the bond of a mother and son, and for his ability to communicate with me.
I am thankful for books.

I am thankful for the little things  :)

                                     Kyle reading quietly in the CHR library, while Alex competed in a chess
                                           tournament sponsered by Rachel Hinnant and myself.

                   Uncle Carl, Kyle and Crystal at our yearly vacation at Ocean City, New Jersey.