Friday, September 19, 2008

Two useful conversations

Today we met with Dr Krabill at Swedish and spoke with Dr Hanley from Stanford. Both were very helpful conversations.

I shall post more detail later but the biggest breakthroughs today were:

1) Dr Krabill reviewed Wren's case and quickly absorbed and reiterated the surgical options we face. She acknowledged the conflicts and understood the various points of view. She feels we need to go to someone with experience in this particular area. She offered to consult with colleagues, do a literature search and see who has most experience with LVOT and Shone's cases and contact those people if possible. She will consult colleagues at CHOB who handle many HLHS cases with similar features. She is going to speak with Dr Cohen and Dr Hanley.

2) We were both reassured by Dr Hanley - in his manner, flexibility and obvious expertise. Most impressive, was his willingness to amend his surgical plan to account for our preferences and concerns about the Ross. He acknowledged that the Ross procedure is flawed in that it involves a healthy valve in the pathology but feels there are no good valve replacement options and he has a 10% failure rate over 100's of Ross procedures. If we prefer, he would do a mechanical or even bio-prosthetic valve with a Kono procedure instead if a VR is required. He is fairly confident that with a repair Wren's current AV will last 5 years. That is his objective in assessing the valve. He proposes the myectomy because he is able to reach the area through the valve and, unlike the modified kono, it does not put Wren at risk of Heart Block (and pacemaker for life).

I shall explain more details tomorrow. Tonight is parent meeting night at school and since Wren missed his nap and will be going to sleep early, I should make at least half of it.

As of today, we are planning on heading to Stanford for Wren's surgery. Pre-op on November 6th. Mum is hoping to arrive on October 30th to stay for almost 4 weeks.


Andrea said...

Glad to hear you have a plan ironed out, at least for now. :) I think you will be pleased with Dr. Hanley and if he is on vacation after surgery, you know that there are other, equally prestigious surgeons who will be present and able to care for Wren.

Izabell said...

i am so happy to hear the Dr K offered so much help and advise. I think you are doing an amazing and wonderful job for Wren and your entire family! you are a wonderful advocate for him! I am also happy to hear your mother will be coming to help.

Shannon said...

Hi Andrea
I feel we are a huge step closer to having the plan. I didn't really spell it out but I think we are almost switching cardiologists through this process. The new one seems a lot more willing to advocate and explore the best option for Wren.

My primary concern about Hanley being on vacation, turns out its a conference, not vacation - was that if we are bumped due to an emergency then we have to wait a week a least and am not sure how we would cope with childcare, work and accomodation in the interim.

I was going to ask you (perhaps shall ask on your blog) whether you tried to get into RMH and whether you have advice on hotel accomodation. We have been given a huge list but not having been there makes it hard.

Shannon said...

Hi Wyndi
Thanks for the compliment but I have seen you do the same thing with Izzy so many times. I think it really helps knowing other parents from our support group and seeing what you have to do to work out a plan.

I read your book recommendations
(just swamped atm) and funny enough, was reading Wicked this week. I hope to get the sequel today. It is totally escapist and just what I need.