Will I die?

This morning (June 29, 2012) while Diego was watching TV he asked, "Mom, will I die?"  Since I was not sure where this question was coming from I replied, "Well Diego, everyone dies".  Then Diego said, "But am I going to die in 1 month?"  The time frame leads me to believe that this question came from his concerns about his upcoming surgery.  This is one of those questions where I struggle with the best way to answer.  Obviously neither the black nor white area is appropriate, but what shade of grey is best.  Diego and I talked for awhile and he ended with, "Mom, I wouldn't be able to live without you."  I replied, "Diego, I wouldn't be able to live without you either."

PA Band Surgery Date Changed

I received a phone call this morning (June 27, 2012) from Boston.  Dr. del Nido’s schedule has changed; therefore, they needed to change Diego’s PA band surgery.  Diego’s pre-op appointment is now scheduled for Monday, August 27, 2012 and his PA band surgery will be Tuesday, August 28, 2012.  This is a small bump in the road as I am learning that there is nothing definite with this process.  I have even heard of parents learning the night before that their child’s surgery date has changed.  The road before us will take a lot of patience and understanding from everyone involved.  Unfortunately, this can be difficult for an 8 year old to understand.  

Boston

Boston called this morning (June 5, 2012) to begin the process of scheduling Diego's first surgery with Dr del Nido.  This was truly one of those bittersweet moments.  It was sweet in the sense that for the first time I am at peace with the path we are on for Diego’s heart.  It was bitter in the sense that this opens the door for a great deal of fears to be exposed.  The first surgery will be the pulmonary artery banding with the hope of having a positive benefit on his tricuspid valve and preparing the left ventricle (that is on Diego's right side) for the anatomic repair called the Double Switch.