"wouldn't expect a family to be able to make this decision. It is a very difficult call even for experienced cardiologists... there are so many factors that come into it and surgeons favor different approaches. There is not one right approach in general, but you have to work out which is the best approach for each child."
Ideally, Josh and I would like him to come to agreement with Dr Hanley - either that the Ross-Kono is the preferred valve replacement option or bio-prosthetic [Debate: + side: if it works we get 15-20 years before valve replacement - tendency toward premature failure in patients with BAV] OR we cannot go that path.
Neither Josh nor I is comfortable with the fact that the Ross procedure uses the pulmonary valve as the aortic valve replacement which extends the area of pathology in Wren's heart. That is fine in cases of discrete aortic stenosis, but he has enough vague and complicated issues as it is and the risk of mitral valve issues too so we want to limit this as much as possible.
I called Stanford and scheduled a "Phone Consultation" with Dr Hanley. The first available was 9am on 9/18. On the advice of their scheduler we have also put Wren on the surgery schedule there. Dr Hanley is already pretty fully booked until the end of the year so she needs to confer with him about when to fit Wren in. The date should be confirmed today:
October 9th - after a major case
November 13th - after Dr H's break
I spoke with Dr Lewin about this and he said we could also be on the Seattle schedule. Our date there is:
Pre-op: October 17th
Surgery: Monday October 20th
So, that gives us a rough timeline either way.