Thank you. My son was diagnosed at birth with severe Ebsteins anatomy, ASD, PDA, and pulmonary atresia with severe valve stenosis.
My son had his first open heart surgery at 7 months old (may 2015). He had a pulmonary valve patch placed for his severe pulmonary stenosis that kept returning after his caths. During this surgery his surgeon also did a tricuspid valve repair. He was doing great the first week post op but while in recovery he coded and the team discovered he had endocarditis and he went septic. The infection distroyed what tricuspid valve tissue he did have.
At 15 months old he had his second OHS (January 2016) where he went to the O.R an we planned for him to only have the Glenn procedure. They was not okay with him coming off the heart and lung machine when they trailed him off; his heart was not keeping up… So both his tricuspid and pulmonary valves was replaced with tissue valves and also he received a full pulmonary conduit. The Glenn was reversed after the replacements was successfully placed. He came off ecmo with ease.
Fast forward today he is now 24 months old (2 years old yayyy an 10 month post op) and doing amazing! He’s like any other toddler! I was just curious to how may other doctors/surgeons experienced this type of repair? I really didn’t want to explain his journey because I find some doctors tend to hold back on explaining the ugly/bad outcomes to parents.
The question about future treatment… My sons last check up was three months ago and they decided he now be seen every 6 months by his team. I feel that time span between appointments is to long considering all the risks possible with two valve replacements. I was just curious if there are different follow up plans for kids with two replacements valves, or is there no true plan and it’s different with every case?