- I have now obtained the package of Cath CD, Surgical opinions, clinic summaries and echo images needed for our referral to Dr Krabill. I hope she can make sense of them for us or at least cast her vote in the controversy.
- Dr Hanley's scheduler called and said that he had reviewed the two dates she suggested and felt that November 7th was a better fit for Wren's surgery. October 9th was a major case before his proposed surgery so it would not have been easy but November 13th was a less large one. I worry about November 7th because it is a Friday (less staffing over weekend) AND even worse, Dr Hanley goes on vacation for 5 days the following day. Is that even safe for Wren? I shall have to ask this at our phone consult next week. PLUS what if another critical case comes along? Do we get bumped for a week, get another surgeon? I do not like it, Sam I am.
- Bri called and said Dr Cohen can see us at 11.30am on the 16th
- Stanford called AGAIN to change our consult with Dr Hanley to 9.30am on the 18th. This is great because our babysitter will get here in time to watch Wren while we talk/listen.
I also read through Dr Hanley's recommendation in more detail and was interested to see his arguments for saving the valve. He says it is not very thickened, has normal motion and no regurgitation. He feels that it may be slightly obstructed by the LVOT obstructions close to it (above, in particular).
I like to hear these explanations. If it was a head-to-head save-the-valve surgery (and no Ross, looming) I would easily pick going to Stanford. However, it is not clear that he will be doing a Kono on the area - he mentioned "extensive myomectomy" - is this the same thing? Questions, questions.
4 comments:
As far as the 5-day post op vacation for Dr. Hanley, doesn't matter, you will never see him again after surgery....unfortunately.
Good luck on this huge decision!
Hi Valerie
I would find that reassuring but I recall from reading Andrea's blog of Drews recent surgery that Dr H attended when he had an infection. Also, they mentioned the debacle of a CICU-friend's child, Brigs, who ended up with heart surgery in his room with Dr Hanley.
That makes me like the idea of him being in the area, even if it is unusual.
Shannon,
Boy I do not envy you and hope that we are not in that situation where we have to choose which place we have to go to. Marin had another app. and we will not be going back until first of November because the change was minimal. We felt so much more at peace knowing that it could very possibly not be until January now. We know it's coming but I just want it to be furthest possible away! I hope you can come to a conclusion soon and be on your way to fixing Wren!
By the way, when were you told that Wren was having the problem that he is experiencing now - I'm curious to know the span of time that you were able to wait until surgery.
Lindsey
I am glad you received reassuring news at the latest appointment. We knew Wren had some subaortic obstruction from pretty early on - when he was only a few months old. It advanced slightly but was stable at his one year appointment. Six months later it had become critical - so the progression was quite abrupt. It has been 2 and a half months since that appointment and we expect surgery in October or early November. I know that each case is different but that gives you a timeline.
If you have time, I would be interested in hearing what kind of surgery was done to deal with Marin's sub-aortic narrowing. Was it removing tissue or a patch?
Post a Comment