Today we got a phone call back from Dr. Azakie, our surgeon at UCSF. And after hearing what he said I wanted to run to the blog and post something called "You will not believe this!" But then I realized, I haven't posted everything that's gone on and that would be confusing. So here is an attempt at a quick recap.
January 18th-after two failed attempts due to illness Drew has his heart cath at UCSF
January 29th-we discuss the surgical options with Dr. Parrish, Drew's cardiologist. They are described to us as the Fontan or a "repair." We naively assume that a repair means putting Drew's heart back to the normal physiology and he (potentially) won't need any more surgery. We talk about getting second opinions. Dr. P recommends talking to Dr. Hanley at Stanford and Dr. Raff at UCD. In the meantime we find out that Dr. Hanley's daughter works for my father-in-law. Small world, divine intervention, fate?
February 11th-We meet with Dr. Raff for our first official second opinion. He says they would do a one and a half ventricle repair, which means they would leave everything that's been done to Drew's heart so far, place a patch between his ventricles and place a conduit from his right ventricle to his pulmonary artery. He would have a normal pattern of circulation and normal oxygenation, but abnormal physiology. The conduits would have to be replaced about every 12 years. He also says they could do a Fontan and we can choose. And he says he would have attempted a repair on Drew as a newborn and not done a Norwood.
February 15th-We get our second official second opinion from Dr. Hanley. He also thinks a 1.5 ventricle repair is the way to go and doesn't recommend a Fontan for us. He says he never would have done a Norwood on Drew and wonders why Dr. Azakie did one.
February 22nd-I speak to Dr. Hanley again and ask why he wouldn't do a Norwood. He says because it has a risk of 20% and doesn't restore normal oxygenation. He would have done a Ross procedure that has a risk of 2% and immediately restores normal oxygenation. It does however require periodic valve replacements. I ask why would Dr. Azakie do a more complicated surgery than absolutely necessary, and Dr. Hanley is curious as to the answer as well.
February 22nd (again)-I call Dr. Parrish to tell him what we've heard from all our surgeons and ask what to do next. He says we should go where we feel most comfortable. I feel most comfortable at a major pediatric heart center, so that would be Stanford or UCSF. After some whining on my part about how I'm just a parent, not a doctor so how can I make this decision, Dr. Parrish asks if I want him to tell me what to do. Yes! Then he said "are you going to do what I tell you?" and I said "maybe...What would you do if this was your four-year old?!" He said he would go to Stanford. And really, I've been leaning that direction, but I feel some loyalty to UCSF and the surgeon who saved my son's life. Twice. But I do know that Dr. Hanley is the surgeon with the most experience. So we had pretty much decided that we would be going to Stanford, but wanted to have one more conversation with Dr. Azakie. Which brings us up to date and to my title of "You will not believe this!"
February 29th-Dan talks to Dr. Azakie about his opinion on which surgery he would do now. He said he could do a 1.5 ventricle repair, but also thinks a complete repair is possible! This is what it sounds like. A normal heart! With a good chance at no more heart surgery! This is probably the only thing he could have said that would make me consider not going to Stanford. He says both surgeries have a risk of about 5%. He said he would have to make the decision about which surgery to do in the operating room. And the explanation he gave for doing a Norwood on Drew was that his aortic valve was much too small to support any kind of circulation.
Just when we got used to the idea that we would probably be going to Stanford and were resigned to the fact that Drew would have a lifetime of surgeries, he says this! So I guess I'm going to keep talking to doctors. Next on my list are Dr. Parrish and Dr. Hanley again!