Dr. Hanley called on Friday while I was driving down to So Cal. Dan spoke with him and relayed this information.
1. He thinks it is clear that we should NOT have the Fontan.
2. He would recommend a 1 1/2 ventricle repair, which means he would leave the SVC attached to the pulmonary artery (the Glenn), place a patch near the VSD to make Drew's heart septated, and also attach an external conduit from the right ventricle to the pulmonary artery to restore a normal pattern of bloodflow.
3. It is not clear to him why Drew's surgeon did a Norwood in the beginning and he never would have gone that route.
It's good news that there is agreement between the two surgeons on what type of surgery should be done now. That makes it a little easier. The hard part is hearing that Drew never should have had a Norwood to begin with, and it might have been possible for him to have only one surgery. It sounds like both surgeons are saying now that that's been done there is no going back, and that is heartbreaking. I put another call in to Dr. Hanley to ask him why he wouldn't have done a Norwood, because it might make a difference in whether or not we trust his orignal surgeon to do the surgery this time. I am waiting for a call back. So for right now we are considering both UCSF and Stanford and need to do a little more digging before we have all the info we need. I would still like to talk to our surgeon at UCSF personally and get his opinion on things.
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5 comments:
I know it had to be tough the hear that Drew might not have needed that one surgery. Ican't even imagine. I am praying for you as you continue to talk to doctors to determine what surgery Drew needs next. You are great parents! Drew is blessed to have you as his Mommmy!
Andrea... that news seems to be such a double edged sword. Thank God for the confirmation of how to move forward. But how frustrating about the other news. I can't imagine. You are an amazing woman!
I can't believe how much you have to "dig" to get the best care for your Drew....that drives me nuts...and I'm not the one "digging!"
I'll tell you a million times...I LOVE Dr. Hanley...but, you dig away. Glad he gave you good info.
I hope all your questions get answered...and you can feel some relief. Drew indeed is lucky that he picked you to be his mom!!
Kathy
Hi Andrea
I am glad there is consensus but I feel how hard it must be to hear that Hanley would not have done the Norwood. I think it is a failing in the whole medical system that we, as parents, are responsible for selecting an institution to perform a surgery when such discrepancy of opinion exists. There should be some database into which the films are loaded and then the most minimally invasive good-odds solution is favored and the 'case' just get referred there. In the absence of my fantasy, shouldn't cardiologists refer us to the team offering the best outcome/process? I think I've told you before that we faced the same decision (with Hanley's team saying he didn't think Wren needed it) but our local one being ambivalent. We were told it was due to the surgeons comfort in the more difficult repair. Sorry for the long rant. I guess I feel a sick in my stomach hearing this news and like you I want to know "why?" from Hanley and would ask your PC the same thing.
Just passing by, I couldn't help but notice you folks look way to young to have to endure this. Good luck to you both.
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