Monday, August 9, 2010

It's the eye of the tiger...'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.


ANAPatterson said...
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ANAPatterson said...

Thinking and praying for you guys. This is one of Payton's favorite songs she knows every word and sings it in the card with her headphones on. Good lyrical meaning as well. Keep us posted and hugs to all!

Anonymous said...

Thanks for the update! I hope that today is a fun day exploring Philadelphia. Sounds like an encouraging visit yesterday.

Mindy Marshall said...

Very fitting theme song for the days and weeks ahead. Glad the post-op appointment went well and that you guys had some fun time playing Philadelphia tourists. I love you all and miss you lots!

Jeannette said...

I'm glad you have this free day to enjoy the City of Brotherly Love!! Wish I were there...AJ

Beth said...

Oddly, my favorite "child" song is GNR's "Sweet Child o' Mine" with the simple refrain "Sweet child o' mine, sweet love o' mine". There is nothing more ferocious or sweeter than love for one's child, is there? I learn more about God's love for us when I hold my children (even to this day) than I ever did from Sunday School.

Where do we go? Where do we go now? Sweet child o' mine. For starters, I recommend the third base side of Citizen's Bank Park - little too sunny on the first base side! And get a photo with the Philly Phanatic if he doesn't scare the bejeesuz out of your little ones!

Peace. - Gabby

Mark and Laura Jones said...

Laura and I are praying that everything works out great and you have a safe trip the way I'm one of your crazy father's friends at Wyeth/Pfizer/Wizer...(maybe not).
Hang in there!!!!

Anonymous said...

Have a great time exploring with your family. At bedtime last night we were praying for Jay, and Grayson said " He will feel better because he is my best friend and he rides my toys outside". We love you!

Jill Green said...

Following your updates and praying for ALL of you this week. Love you!


Martha said...

Lots of love and prayers from here to Philly!!

Anonymous said...

When I read your posts I always feel that I right there. My thoughts and prayers are with each of you!
(PS: Loved the photo with Rocky!)

Sush said...

Love and prayers all day everday...

Lisa T said...

so glad you are out enjoying some of the city. the zoo is amazing so try to hit that if you can. the aquarium is good, but it is expensive, if you end up staying at Ron Mc House, ask about passes at the front desk, they usually have freebies for the guests there for the zoo, aquarium, ball games etc. The best part about the aquarium trip for us was taking the subway to the port, then taking a boat across. The ferry ride across to NJ is fun. there is a hands on kids museum play space like marbles that was just re-done when we were there, should be great now. i will find the name of it.
Eat some food from the street vendors across from the hospital, especially the greek one!!! the cheese steaks there are great too and the drs are all eating them so they must be okay right? keep us posted on when things are scheduled, we are praying for you. Will you post an address where we can send a little care package?

Annie said...

Just heard good news-sending love and prayers

Sarah Schroeder said...

Jen I am thinking of yall and praying for you. I hope the surgery goes perfectly and his recovery is quick. You are loved!