We talked with members of Joey's cardiology team today to find out more about where we're going from here. We're still trying to internalize everything they told us, but here are the important parts.
The good news is that Joey's continuing to do well as we wait for the duct between his pulmonary artery and his aorta to close. In fact, he's so strong that they apparently needed 3 people to hold him down yesterday for his echocardiogram!
The bad news is that his Ebstein's Anomaly is so severe that his right ventricle is essentially useless. There's nothing they can do to fix it, so instead they're going to have to essentially bypass the right side of his heart, leaving him with what they call a single-ventricle system.
This will be done via a series of 3 surgeries. The first surgery will happen as soon as they've confirmed whether or not there's a blockage in his aorta (which, if present, would be corrected during this surgery). This will involve increasing the size of the hole between his two atriums, sealing the bad valve between the right atrium and right ventricle, and adding a band on his pulmonary artery to decrease the blood flow to the lungs.
The second surgery will happen when he's 3-6 months old. This will involve detaching the superior vena cava (the main vein that sends blood from the head to the heart) from the right atrium and connecting it directly to the pulmonary artery, this bypassing the right side of the heart.
The third surgery will happen when he's reached 30 lbs, which could be somewhere from 3 to 5 years old. This will involve doing essentially the same thing as the previous surgery, but this time for the inferior vena cava (the main vein that sends blood from the lower half of the body to the heart).
The real kicker is that even after all of that, he still has a 50% chance of needing a heart transplant sometime later in life.+Rachel Zara Roth
and I are still reeling from all of this, but we greatly appreciate everyone's support.