Last Monday found Kellyn, Ruth and I back at the cardiologist for a scheduled appointment. Although I would have loved to have heard them say - "I don't know what you've been doing with her care at home, but you've mended her heart" - what we did hear was fairly positive.
She still has pretty rough oxygen levels as is expected with Tetralogy of Fallot, though she appears to be tolerating things very well. Since her last cardio appointment she gained over a pound and a half and as we can attest she is feisty as all get up. These two items will certainly bode well for her for surgery.
They anticipate discussing her case at surgical conference either the Thursday before or after the 4th and pull together a schedule from there. Our cardiologist, Dr. Gaum (real solid guy), anticipates a likely Fall surgery. Who knows though things can change pretty quickly on hospital schedules.
We are about two weeks out from the age when Evie had surgery (5 weeks old)which we've come to realize is quite early. As solid as Kellyn (Special K) is I struggle with thinking of her little body going through this intense procedure. I have confidence in the team in Rochester though and pray daily for my girls and their heart health.
Another fantastic item to note is that genetic tests came back indicating that Kellyn does not have a chromosomal 22 defect that some of the physicians alluded to a likelihood of her having. It includes a whole host of complications including Tetralogy of Fallot. Doctors continue to be floored by the fact that we have two children with the condition. All but one we have seen have never seen it in siblings. One cardiologist said it best in that pretty much every ailment we wrestle with is genetic - we just don't know exactly how. Just lucky to have these distinct ladies beautiful and bound for greatness. They are so very lovely, but incredibly trying to manage.
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