Day 9

Yesterday was pretty quiet and Shawn's standard m. o.  He seemed to be playing a little game with the RN where he'd drop his sats and the nurse would increase his ventilator oxygen then his sats would go too high and the nurse would lower this oxygen.  This went on about every 5 to 10 minutes throughout the day.  I could almost see a little grin on his face!

I've been feeling a little melancholy the last couple of days as my excitement and adrenaline of the delivery wore off and was replaced with what I imagine to be the usual feelings of a worried parent with a child in the ICU.  I have even started thinking that maybe I initially misunderstood the doctors and it wasn't the delivery that was his major risk and my enthusiasm was misplaced.  I was also starting to worry that I was getting overly confident and optimistic about his recovery thus far.  I told Dr. Cordes (Shawn's cardiologist on duty this week) how I felt and he told me my enthusiasm was not misplaced.  The odds stacked against him at the delivery and first surgery were extraordinary.  They were just as excited as we were for him to be here at this point to continue fighting.  He also echoed my same worries that they are even battling their own confidence and optimism during this recovery as he is doing so well.  They still need to remind themselves that he is still a very special case needing specific treatment and a custom surgical plan.  I would like to thank Dr. Cordes for taking that time with me yesterday and to validate my feelings of late and somewhat calm a few of my worries.

This morning is Riley's surgical conference and as I mentioned in the last post we'll have a better idea of the plan going forward for Shawn.  I have been told that our doctors here have been talking at length with Cincinnati and Boston Children's hospitals about Shawn's case.  It is comforting to know that the best of the best in the country are collaborating to help give my son the best care possible.  I'll post again this afternoon after we talk with the doctors.