Exactly one week from today (May 20), my daughter Alexandra will have her third (and hopefully final!) open heart surgery, the Fontan. She was born with a double inlet left ventricle (her right ventricle had not formed) and transposition of the great arteries. I decided to start this blog to document her progress, discuss challenges and share with other CHD families and promote greater awareness and understanding of congenital heart defects.
Her first surgery was performed at 5 ½ weeks old, and the second was at six months. We have had this third and final surgery hanging over our heads for over two years now. While you never want to see your child go through something so traumatic, you want to get it behind you and move forward. We are happy to do that now!
Last Thursday, we traveled to Childrens Hospital in Philadelphia for a day of testing on Friday. While it was a grueling day with no food from 9 p.m. on Thursday to 3 p.m. on Friday, she did amazingly well. Certainly better than most adults! She asked every doctor and nurse what they were going to do when they approached her. We can see that she will keep the nurses hopping when were back for surgery.
Were now getting all the logistics in place to be at the hospital for an extended stay.
I would be interested to hear from others who have gone through the Fontan with their children and how it went.