...it's the thrill of the fight
rising up to the challenge of our rival
and the last known survivor
stalks his prey in the night
and he's watching us all with the eye of the tiger
So many times, it happens too fast
you change your passion for glory
don't lose your grip on the dreams of the past
you must fight just to keep them alive
-Eye of the Tiger, Survivor
(Regular blog readers - well okay just Mandy - sometimes try to guess what I'm going to use for my intro song ... betcha nailed this one!)
So, we made it safe and sound to Philadelphia. Luke did great on his first flight, and Jay was super stoked about the airplane ride (though he made it clear we were NOT riding on Jay Jay the Jet Plane). When we stepped into the airport, the overhead message said "Welcome to Philadelphia!" and Jay repeated it for the entire walk out to baggage claim. The dads had no problem along the drive and managed to stop only once for lunch/gas/bathroom break. Let me assure you that if we'd been traveling with them, we'd have required at least 2 stops for each of those tasks, adding many hours to the travel time. Our hotel is great and we have brought enough food to last us for a 3 month stay. If we measure how much we're loved by how much food you friends sent for our journey, we are very, very well loved. And may gain very much weight before our return.
This morning, we headed to CHOP for pre-op and meetings with the surgeon, cardiologist, and some additional testing. Everything went as well as it could have gone. It seems silly to say, but people at a children's hospital are really good with kids. They take the time to explain what they are going to do, let him see and explore the equipment, and talk with him about things that interest him. They really make being at the hospital as un-miserable as possible.
There isn't much new medical news to report. The surgeon, Dr. S., is fairly certain that it's going to be a replacement valve rather than a repair. While that's disappointing, we feel confident in his judgment. Jay's heart valve neither opens enough (stenosis) or closes completely (regurgitation). The way to fix a valve that is regurgitrant is to make it a little too small, and the way to open up one that is stenotic is to allow for a little regurg. (Nice word, huh? Nothing like a little heart valve puke.) So, the solutions to the two problems are, unfortunately, in direct opposition to one another.
As mentioned before, the main problem with an artificial valve is that he'll have to be on blood thinnners - coumadin. But talking with folks here really reassured me about that. He can still be active, and I won't have to constantly worry about every little bump and bruise. He'll bruise more easily, but he's not going to bleed to death from a paper cut. He can still play sports (though no football to Derek's mild dismay), but he'll have to wear additional protective gear. He can even play baseball as long as he wears a chest protector.
One thing that was slightly comforting news is that he expects the whole procedure to be 3-3.5 hours, while the other surgeon we met with indicated 5-6. This surgeon does this type of procedure more frequently, and we want to minimize the time under anesthesia and on the heart-lung machine. And of course, we want to minimize the time we have to spend torturing the chairs in the waiting room by digging our nails into the upholstery.
This evening, we headed out to do a bit of sightseeing and started our tour of Philly with the Philadelphia Museum of Art. Don't worry, we didn't take a toddler and an infant into an art museum ... we just pretended to be Rocky climbing the steps out front. And, like Rocky, we're ready to take on a big obstacle and come out on top.
Thanks to all of you for your prayers for our safety and for the difficult days ahead.