We're back to waiting. Waiting for cardio comic to get back to us about when we can schedule Katelyn's open heart surgery. We had a good checkup with him on Tuesday - where he was really happy with her general development and thinks she looks fantastic, and said that whether we did it now or in 6 months time it really doesnt make any difference.
He did an echo again ( think this was the most detailed one he's done), which showed that the band is doing a great job, that the VSD side of the AVSD (bottom hole) is REALLY big and will require a really significant correction. He's mentioned how BIG it is every single time he's had a look - doesnt make you feel fantastic! However, the not so nice bit, was that he spoke about a piece of tissue, that he has mentioned before but not in so much detail, and how he doesnt know how it may impact the operation.Basically, the piece of tissue seems to be close to the aorta, and should it be placed badly (become too close / cause a blockage to the opening of aorta etc), then basically celebrity surgeon on the day would not do the correction at all and that it cannot be repaired. Those were his words. Whether there are other things that you can do, we have absolutely no idea - he spoke and explained it to us a bit, but the he said, we'll cross that bridge if we come to it. So thats really just put a huge uncertainly on the whole thing, and even more reason for us praying that its sooner rather than later, as we wont know the impact / result until she comes out of surgery. The older she gets the more life threatening her condition becomes (ok, only really talking after she's 2) - as her lungs will eventually become flooded and not cope anymore. But I am daily trying not to think about that, and am so unbelievably grateful that we have one of the top surgeons in the world operating on our little K!
Anyway, its friday, praying we'll know by the end of today when this surgery is going to be, but hey, life doesn't always work out the way you think is best. I know Gods timing will be right.