Just got off the phone with Jessamyn and Pierce is doing astoundingly well. For a family that was told surgery would most likely be a death sentence things have really turned around since Pierce was in Boston. Pierce had surgery on Monday afternoon, went in around 1pm and came out around 8pm and has since, he had a TAPVR repair, AV canal repair, and other repairs with no name because Pierce is so complex that there are no standard repairs.
Critical 48 hours after open heart surgery have been completely uneventful with no codes or desats. He is following his post op recovery to a T.
I have to say this…Children’s Hospital of Boston never gives up on kids. They bring hope to kids that others have given up on. Not just in Pierce’s case but I personally know of 5 other families in the last 6 months whose children were sent home to die by another hospital only to be giving the tremendous gift of life by the Cardiac team at Boston. CHB is in a league all its own. Thank you, thank you, thank you, CHB for never giving up…as a Mom with a child who carries an 80% mortality rate you have brought me nothing but hope, and you are doing that every single day for so many families. Not only do they have the best outcomes but their outcomes are on the absolute sickest children in the world.
As Pierce recovers beautifully from his extremely complex surgery another little boy named William is set to go to step-down at CHB. William was another Heterotaxy boy who was sent home to die by another hospital. Just 2 short months at CHB William is thriving for the first time in his life! For the first time in his life he is all smiles and off a ventilator. Children’s Hospital of Boston has given these two Heterotaxy families Christmas Miracles! And from the very very very bottom of my heart and the Heterotaxy Community THANK YOU BOSTON!