Tuesday, February 12, 2008

Consult with UCD

I'm sorry I didn't post sooner, but I wasn't exactly sure what to say. We did meet with the surgeon at UCD yesterday and we learned a lot. When we were told that Drew could have a two-ventricle repair by our cardiologist we thought it meant that they would undo what they've done and reconnect his heart to be just like a normal heart and he wouldn't need anymore surgeries.

Well, that is not what they meant. Or at least, not what Dr. Raff would recommend. It gets a bit complicated unless you know a lot about the anatomy of Drew's heart, but basically they would leave everything they've done, place a patch so that Drew would have two separate ventricles and place an external conduit from his right ventricle to his pulmonary artery. So his blood flow would follow a normal pattern, but his physiology would definitely not be normal. And conduits don't last forever and need to be replaced. Dr. Raff was guessing that a Hancock conduit would last about 15 years before it needed to be replaced. Risk of this surgery was estimated at 2-5% (of any complication from infection to death). Possible complications with this anatomy include stenosis and arrythmias, with Dr. Raff predicting we'd eventually have problems with arrythmias. When I asked him how they treat that, he said sometimes with medication, sometimes with a pacemaker, and sometimes with a transplant.

He presented us with the details of the other surgical option, which would be a Fontan. Risk of the surgery is lower, at about 1-2%. These surgeries typically last about 20 years and then a pacemaker or a transplant is needed. I told him I was scared of the Fontan because I knew that kids eventually need transplants and I just learned that transplants last about 10 years and they rarely re-transplant. He said that his bigger concerns were the possibility of developing PLE or plastic bronchitis. PLE I have heard of due to the unfortunate situation of a heart buddy developing the condition. I haven't heard of plastic bronchitis and I don't think I'm going to look it up. Also, he said with a Fontan Drew's exercise and endurance would be limited.

So we were a bit discouraged to learn that this was not the miracle fix we thought it would be, and that there will definitely be more surgeries in our future. It was also just reinforced that we don't know what the future holds as far Drew's heart is concerned. Transplant seems to be a possibility no matter which path we choose, and I don't like that. But it was still a good meeting, we learned a lot and got one extra opinion under our belts. I am very anxious to talk to Dr. Hanley from Stanford and hear what he has to say. We should hear from him tomorrow evening or Thursday morning. After that I want to meet with Dr. Azakie from UCSF because I haven't had a chance to talk to him myself yet. And then we'll make a decision about where to go from here.


Katie Scott said...

I am so sorry that the news was different than what you were expecting. I pray that God will guide you and give you clarity about which surgery to do. Love you guys!

Krista said...

Hi...I've been reading up on your blog..learning about your little guy! What a cutie!

I am so sorry that today was discouraging...and probably just totally overwhelming...so many options with so many "what-ifs." Rejoice that you have options...and just take it one day at a time..trust your mommy instincts.

Hoping you get lots more answers and confirmations after you talk with some more surgeons...I've heard Dr. Hanley is the one of the best!

I definitely will keep you and your family in my prayers...these little heart kids are just so special! Thanks for sharing your journey!

Krista (Kate's mom)

Molly said...

You're doing the right thing. Get all your opinions, pray about it, pick one and know that God is watching over Drew and your family. You guys are awesome parents! Keep fighting the giants!

Anne Marie said...

Whew- Andrea, this whole journey with Drew has been filled with this up and down roller coaster for you all. This post, for me, as a non-heart-mom, was very, very tough. I just keep reading over the years, and hoping that there will be this one surgery to end all surgeries- the fix our Drew's heart forever. I know it was probably very niave of me, but I have always hoped that- in this day and age- they would be able to completely heal him. When I read that he'll most likely need more surgeries years and years down the road, me heart ached for you. For all of you- in your Himmel. family and in your "Heart Kids" family. Know that, though I could never know the suffering you feel each day, each of you heart mom's inspire me beyond words. I will never again take my childrens' health for granted. I hope that if I were ever faced with a life-threatening challenge, that I will have the courage to fight the giant as you all do. I am so proud of you and Dan, and this AMAZING job you have done for over four years. Whatever choice you make regarding his next surgery, I know that God will guide you and protect Drew, and we'll be praying that it is the option that will give Drew that best possible life. We love you guys.

Dina said...

Hi Andrea
I'm sorry the news was not what you expected.
I did want to let you know something about the Fontan. As you know Jillian has had the Fontan. She has both ventricles with a complete VSD and a straddling valved which is why they could not do a repair. But something that her PC continually tells me when I fret about the future and something Dr. Karl even reminded us time and again is that she has both ventricles pumping as one which creates a stronger pumping action than in a true hlhs patient. So the thought is that she won't encounter the same problems that a HLHS patient will because her heart is pumping stronger and won't wear out as fast as they anticipate a heart with only one ventricle would. Actually, when she had her Fontan Dr. Karl was so optimistic about her future because of her heart functioning with both ventricles it was very encouraging. It sounds as if this would be the case for Drew as well if it is decided to do the Fontan since he has both ventricles too.
My thoughts are with you as you sort through all of the information.

Vanessa said...

I know you have a heavy burden on your shoulders. You are a wonderful mother and getting second opinions and doing your research so I know you'll make the right decision.