Hi, TK!
Hi, TK!
Welcome to this fabulous group! My daughter Katie is four and just went through the fontan and a valve repair, then replacement (yes! two surgeries in one very long day!) on July 12th. We had a tough go of it for a while, but she is now doing great! We just got a sat reading of 99 at her last checkup!
Highest for us ever. 92 at birth and spiraled down steadily since, even with the BT shunt and bilateral bidirectional glenn surgeries. Katie shares the L-transposition with Eric. To my understanding the L-transposition of TGA is the same as ventricular inversion. Katie's ventricles are indeed flip-flopped. Instead of the ASD & VSD, Katie has the complete atrioventricular septal defect............well, and a few others thrown in for good measure. It's good to hear that Eric is doing so well, and the fontan can wait for a while longer.
Like Lyn and Cort said, there are some other great pediatric heart groups out there if you are looking for more fontan type parents. Let me know if you think you are interested, and
www.tchin.org is a great place to start, btw. I think my Katie is the only member on here who has undergone that particular procedure. Not to push you away from this group at all. I cannot speak highly enough of the members on here who are so compassionate and so supportive.
I stumbled upon this group last year when I found out one month post-op that Katie's repair of her common AV valve went south and was not holding up. I was terrified of mechanical valves and coumadin and what our future might hold. This terrific group of people did their best to allay my fears and reassure me that it was not the end of our world as we knew it. With their steadfast and unwavering support - and I do mean
support - we broke a record on here
and one member GeeBee even drove four hours to come see us in the hospital - and their cheering and praying, we made it through. We were gone three weeks and six days, but we did it!
And ya know what? LIfe did NOT end as we knew it! Sure, it's a bit different, and we are a tad bit more careful, but we are not living in a bubble as I had once feared.
Oh, and don't worry about Eric crying and being awake when they haul him off to surgery. They usually give the kids a good shot of versed a little while before. So, they haul away a little drunken sailor who is feeling no pain..........just wish they would order one up for the parents as well.
Welcome again and ask any questions that you might have. Hugs. Janet