Friday, February 29, 2008

Second Opinions-A recap

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!


Katie Scott said...

What encouraging news! I will keep praying for Drew and his doctors!!!

Valerie said...

Ughhhh, Andrea. Gosh, I wish I could help you make this decision. I will be thinking of you guys!

Kathy said...

I don't know how you keep it all straight!!!
You are AWESOME ... working SO hard for Drew.
I do hope that there is a surgery that can repair his little heart and keep him out of the OR FOREVER!
Can't wait to see what Dr. Hanley has to say about this one!!!

Jane said...

Wow Andrea, talk about a roller coaster.

I'll be praying for you and hoping you get some clarity on the right way to go.

Maybe Dr. Hanley and Dr. Azakie could arm wrestle for it?

Allison said...

Dr. Azakie is so confident isn't he? I'm sure you will find the right answer soon enough! I hate making decision for Joshua too, well at least big ones!
Anyway, good luck!

Our Family said...

WHAT?!?!!? This is potentially great news, yet now it involves more soul searching, and doctor searching. Why can't everyone just agree????

Molly said...

Crazy! What a roller coaster ride. Good for you guys... you're such awesome advocates for Drew and I respect how you're knocking on doors of every respectable heart surgeon in the area!

Shannon said...

If Dr Hanley has not suggested a complete repair I would be very cautious. I am sure you will find out more this week and of course I hope its what you want to hear.

Forgive my suspicions but could this surgeon have heard about your second opinions and be feeling the comparison?

Party of 5 said...

oh my much to take in and process. Thank God for your persistence, research, follow-through, tenacity, etc. etc. And thanking Him for second opinions (and third and fourth....). Kacie

Vanessa said...

Oh I do not envy your position. I could only imagine the stress your dealing with. I have heard wonderful things about Dr. Hanley so I'm curious what he has to say next. When are they wanting to do the surgery? Summer?

I will pray that God guides you in the right direction.

God Bless

Elle said...

YAY!!!!! That is so encouraging!

You are in our prayers. <333333

Adam said...

Keep it up Andrea. Diligence is critical as you are showing.

So you know, about 35% of heart valve replacement patients do not get second opinions. Frightening, right?

Anyways, I had a ross procedure surgery in 2005. There's nothing easy about double heart valve replacement but I'm doing pretty good now.