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... :)
always praying for her special heart here (and not special in the physical sense alone...her special heart in that she is so incredibly sweet and kind as well). :) We love YouYou and your family, and have a GREAT time in Disney!!!
ReplyDeleteIt is good that you are learning as much as possible. I agree--if everyone looked through her records and agreed that she wasn't a good candidate, it would be a relief. The decision would be made for you.
ReplyDeleteHave an AMAZING time at Disney!!!!!
I'm praying for you guys!!!!!!! Praying that the Lord would make that answer so very clear. Oh, how those echos are hard for me too, I fight back tears the whole time...and it is the time when I find the big questions of why God would allow her heart to be this way get so big. I also 'get' that need to have all of the information and the desire to have the choice be clear. We are still wading in deep waters with Georgia's heart where they do not know what is going on and I am the one informing them of what is happening daily. I so want someone to look at her reads and say "this is what is happening and this is the way to treat it"
ReplyDeleteI hope that you have a fantastic time at Disney!!!!!! Take tons of pictures :)
Shannon
I can't imagine how scary these appointments must be for you. Praying that God will make available to you any and all options that will heal her little heart.
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