Levi's Heart: ALL THREE OPINIONS ARE IN

It's taken me longer than I would have hoped to get an update up. Over the last two weeks we've received a lot of information and we're still in the process of sorting it all out. The long and short of it is that we've finally heard back from Boston, Stanford, and LA. For so long we'd just been wanting to get opinions from these major centers so that we know what the next step is for Levi. Now that we have them, we wish they all had the same opinion! That being said, we are getting closer to figuring out the what and when of Levi's heart surgery.

Here's a summary of the opinions, in the order in which they were received.

Boston: (we spoke with our cardiologist who spoke with doctors in Boston)
Even though Levi's recent CT showed no dissection of the aorta, they are still very concerned about the significant dilation of his aorta. They feel that surgery for his dilated aorta should be performed soon, whether or not intervention for his valve is imminent. Then, in addition to fixing his ascending aorta, they would also try to repair his aortic valve.

Stanford: (we spoke with Dr. Hanley by phone)
He believes that Levi's dilated aorta is not of major concern in and of itself, and just needs to be watched for now. The consensus of his group is that Levi does not require any intervention at this time. At some point he will need surgery, but this will be based on either the progression of his leakage, and/or increasing left ventricular dimensions (dilation of the left ventricle). When the time comes for Levi's surgical intervention, his preference is to perform an aortic valve repair. If a repair is not possible or successful, then a Ross procedure would be performed. This decision would be made at the time of the surgery. He wants Levi followed closely for now.

LA: (we met with Dr. Starnes last week)
After looking at Levi's echos, he believes Levi needs a Ross procedure. Based on how malformed Levi's valve is, he doesn't believe a repair is a viable option. Even though Levi's left ventricle is functioning fairly well at this time, because the aortic valve leakage is severe, he believes it's better to do a Ross before the heart function worsens and there is irreversible damage. He'd fix the dilated ascending aorta at the same time. He recommends surgery in the next few months, between now and July.

Now that all the opinions are in, we'd like to talk to Levi's cardiologist again. Right before we went to LA, after hearing from Stanford, she said she'd recommend Stanford. She also said she'd be comfortable if we chose either of the other centers too. We also felt really good about Stanford after speaking with the surgeon there. Then we went to LA, and now we aren't sure and have more questions.

So, tomorrow I plan on speaking with Dr. Tajchman about what we learned/heard in LA. Then James and I would like to set up another phone consultation this week with Dr. Hanley at Stanford. After that, we hope to have a more clear picture of what the best course of action and timing is for Levi's surgery.

On April 14, Levi has another echo scheduled at his cardiologist's office. We'll see how his heart is dealing with the severe leakage and we'll go from there.

We pray for clarity and wisdom in this sea of information that keeps on flowing our way.

[For those of you who may want more specifics from Levi's last appointment:]

aortic insufficiency is in the severe range
mean aortic valve gradient is 30mmHG (moderate aortic stenosis)
left ventricle remains mildly hypertrophied subjectively
ascending aorta is 2.2 cm (z-score of 6)
otherwise asymptomatic
blood pressure 90mmHG systolic
weight 8.45 kg, height 69 cm as of 3/15/11 (steadily in the 20th percentile)

CALIFORNIA

Our road trip to southern California went really well. It took about 17 hours to drive each way and the kids did surprisingly well. We had a jam-packed schedule and very little rest, but it was a wonderful trip filled with family, friends, the beach, Disneyland, and a business trip for James. We didn't get to see everyone we had hoped to, so that was the biggest bummer. We could have used another week down there! That being said, there's no place like home. We are finding rest and relaxation as we get back into the swing of things here in Oregon.