2023 Update: When we where originally given Wesley’s diagnosis of truncas arteriosis we knew he was looking at multiple surgeries throughout his pre-adult life. Mostly to keep putting bigger replacement parts in as he grows. Unfortunately this surgery is not part of that original plan. His valve has never been right since birth but doctors wanted to keep the natural valve in as long as possible and attempted to fix it during the last surgery. It’s been 2 years since then and the valve just ain’t cutting it anymore. So this surgery is all about fixing the valve. We assume a complete replacement with an artificial valve but we’ll find out more as we get to Philly and go through his first couple days of appointments.
2021 Update: Welcome newcomers and returners to our story. In October of 2015, Pam was 6 months pregnant with our new son when the doctors realized something was wrong. After weeks of anxiety and many doctor visits we finally got the diagnosis that Pam and I will never forget. Our unborn son has a rare Congenital Heart Defect called Truncus Arteriosus. It will require immediate open heart surgery after he is born and multiple surgeries throughout his life. Well, Wesley is now 5 years old and living a normal life. He is so active and energetic you would never know there is anything wrong. Unfortunately as he grows his artificial heart parts do not and it is time to go back and get some new ones. We've been dreading this since the original diagnosis but we are ready to start phase 2 of his journey and get it behind us. If you want to know more, I encourage you to read through past journal entries and I will be posting updates as we spend the next couple of weeks in Philadelphia. Thank you so much for your support!
2016 Original Post: Welcome to our Caring Bridge site. We've created it to keep our friends and family updated on our unborn son who was diagnosed with a Congenital Heart Defect (CHD) called Truncus Arteriosus. We appreciate all your support, words of hope and encouragement you have provided over the last months. We hope to use this site as a means to keep everyone updated as we begin our journey to Children's Hospital of Philadelphia (CHOP). Pam, Clara, and I are Philadelphia bound on January 25. We are expecting to have the baby the week of February 14 (That is Plan A). After our son is born, they expect to do open heart surgery 3 to 5 days later with a 2 to 4 week recovery time. Pam and I want to thank all of you for your support since the diagnosis in October.
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