After the news from our surgeon last night, Jesse and I were elated!  It’s amazing the way darkness can try to seduce your thoughts when you have so much at risk.  We left Shriners, where we had been waiting, to head across to MCH.  We were almost giddy with relief.  We ran down and grabbed a bite to eat then waited in the family lounge for Ben’s surgery to finish up and his transfer to the PICU (pediatric intensive care unit) to take place.

Our anesthetist came in to chat with us there.  She told us that normally they try to extubate spine surgery patients in the OR, but they kept him intubated because he was significantly swollen near the trachea area.  Ben had been in surgery close to 10 hours by the time everything was said and done.  During that time he lost a lot of blood, so they had to give him transfusions and two other liquids – I forget what they were – saline and another type of blood product.  So we walked into the ICU knowing he would be sedated, swollen, and intubated.  We were ready (and excited) to see him.

When I first looked at him I couldn’t register why the nurse was pointing to the person on the bed.  (Keep in mind that I had not slept much the night before I had been stewing with worry the entire day.  I saw that she was gesturing towards a young boy on the bed and I wondered about him.  I looked at the door and saw that the sign said Benjamin, but still I remember feeling confused.  Suddenly I was sucker punched with the realization that this WAS Benjamin.  The edges of the room darkened and I tried to focus and understand.  I sat down to push away the dizziness and nausea.  I took a moment to compose myself then got up and looked again.  Jesse and my eyes met and we were both overcome with the grief that goes with coming to the complete realization of what your child has been through.  You can plan for it, envision it, discuss it, then suddenly it’s there and it is so far beyond what you could possibly imagine. Every inch of his 32 pound little body has been violated and intruded upon – ravaged by tubes and hoses.  It was difficult to comprehend.

Ben was kept deeply sedated most of the night.  The few times that he was somewhat aware of his surroundings were awful.  He is scared and confused.  I was whispering “love you’s ” in his ears during one of his episodes and I could see him mouth mommy with tears falling out of his swollen eyes that he cannot open.  My heart is in a thousand pieces.

Our Shriners team came to see us first thing this morning.  I was so grateful to see them not just because they are knowledgeable about the surgery and the process (and the fact that they feel like family now that I’ve drooled in front of them) but because they know who this child is – not the meat-like person lying here.    They know the amazing that dwells in this boy.  I can’t wait to get back to Shriners and have our nurses help us love him back to health.  

This morning’s plan is to extubate him around 10:00ish.  I will put on Ben’s hearing aids and the FM system so that he can hear my voice over everyone else’s.  He will be scared and confused.  They have warned me that because of the swelling he will likely have bronchiospasms for the first five minutes and to be prepared for that.    I’m dreading it, but this needs to be done.  It is our next forward step.