Here's a quick update on how YouYou's appointment went last Friday (quick because it's late and I should be finishing up packing since we leave for DISNEY WORLD tomorrow :)
Overall her cardiologist (Dr. R.) was pleased with how she is doing. She has grown 2 inches in 6 months and gained about 9 ounces. He did an EKG and an echo. If I ever get too laid back about the seriousness of her condition though, all I have to do is sit through an echo of her heart. I usually feel sick to my stomach at some point during the procedure. It was probably a little worse this time because there was a student Dr. with Dr. R. and so he was explaining more about YouYou's unique heart. There was a lot of..."insufficient" this and "leaky" that. But then as soon as it is over YouYou hops up and begins to explore the room and be her usual curious self and then I take a deep breath and whisper a prayer of thanks to the One who created her special heart.
I talked to Dr. R. about our concerns that we feel like we might need some more information about the Double Switch surgery. He listened intently, and as always I gained more respect for him during our conversation. He does not think YouYou should have this surgery (and I already knew this) but he does understand our desire to explore this a little further. Basically I just explained that I did not want to get to a point where YouYou starts having complications in a few years and then someone tell me, "Well, I'm sorry but your daughter is too big for the Double Switch now so her only option at this point is heart transplant."...when we hadn't even really researched the Double Switch as an option in the first place? I hope this makes sense? Dr. R. does not think that YouYou would be an ideal candidate for the Double Switch (and he still wouldn't recommend it if she was). But we don't know this for sure because we haven't had her records looked at by someone who performs the surgery. If I am completely honest, then I will admit that I want someone to tell me that she is not a good candidate for the surgery at all...because then our decision is easy! We will just continue what we are doing now (medicine's, monitoring her, etc.) and pray that God will sustain her heart for many, many years just like it is! But we just need more information...
So basically, we are on a prayer and fact finding mission. Dr. R. is sending out some emails and will be in touch with us within a couple of weeks and then we will go from there. I will keep you all posted!
Thank you all for your kind words, prayers, and support! Now I need to go pack... :)
