It's hard to believe—even for me—that in just a week Levi will undergo open heart surgery. You'd never guess he's sick.
Since his last two surgeries in 2008, we've spent much time and energy reigning Levi in. He's the first one to get up in the morning and, if it were up to him, would be the last to sleep at night. He spins through each day like a tornado, leaving behind a wake of toys, half-eaten sandwiches, cups of water and pockets-full of treasures. His hands are always busy as is his mouth, spinning tales about friends—real and imagined—and asking a string of questions to which he usually already knows the answers. He never misses an opportunity to speak to a stranger, touch an object, write his name on an unblemished surface, push a boundary, dispense a hug, plant a kiss, or issue a spontaneous, "I love you." He is, in short—and he is that too—a force of nature.
And yet on Tuesday at 5:40 a.m., Levi, his father and I will board a Delta puddle jumper bound for Philadelphia and its children's hospital—rather unsolicitously known as CHOP—for a procedure of as-yet unknown proportions. Here are the problems the surgeon will face:
• Double outlet right ventricle: in other words, instead of the major arteries exiting the right and left ventricles of the heart, they both come from the right side
• A large, malaligned ventricular septal defect (VSD): he has a hole between the left and right ventricles that's huge and in the wrong place—not that there's a "right" place for it, I suppose.
• Transposition of the great arteries: the pulmonary and aortic arteries are backwards, meaning that oxygen-poor blood gets pumped into the rest of his body.
Three-and-a-half years ago, shortly after Levi came home to us, a local surgeon patched the VSD. However, because of its location, the patch itself interferes with the blood flow inside the heart. Because he's a growing kid, Levi's doctors here have been monitoring these pressures closely, and a couple of weeks ago he hit the magic number telling us it's time go back in.
At CHOP, the surgeon will determine whether the patch can be adequately modified or if greater measures will be required. The cardiologist I've talked with there, Dr. Bird, has mentioned the possibility of a procedure known as Ross-Konno, which would essentially re-plumb Levi's heart, replacing the aortic valve with the pulmonary valve and the aortic valve with a transplant, or allograft. Although used primarily in instances of valve disease—Levi's valves work perfectly well—this procedure can also be a solution when the anatomy of the heart defects prevent simpler fixes.
We're voting for option #1, but we will see.
Levi's (wonderful) new cardiologist feels confident that we've chosen the right place for the surgery. The surgeon at CHOP, Dr. Spray, specializes in this type of heart problem. If all goes well we could be home within a week. We're nervous, of course, but feel confident he's in good hands. CHOP is the number two pediatric cardiac center in the country. And, more importantly, Levi has a Father who loves him even more than we do.