Good news all around

The Cardiologist

Riley had an x-ray, echo and check-up with the cardiologist yesterday. On Wednesday we took him in for numerous blood tests.

1. Riley's blood panel looks very good - his electrolytes are normal and his albumin is normal (actually high-normal).
   
2. His chest is completely clear and his hemodynamics look good.
3. His INR (clotting) is hovering between 2.2 and 2.8. We have been doing the home finger stick test every 3-4 days with mixed results. The machine is finicky. We call in his INR result and the coumadin clinic gives us a dosage schedule for the next few days.

The biggest news from the cardiologist was a surprise: Riley's common valve regurgitation is the lowest it's ever been. Dr. Tarnoff now classifies it as "very mildly leaky." Historically it's been "moderately leaky" and it was "severely leaky" when Riley was at his worst in March. Tarnoff is as stumped as we are - this was completely unexpected. If anything, one would expect valve regurgitation to be better with the Fontan circulation than with the Glenn. One possible explanation is that the reduction in lymphatic vessel flows (due to the elimination of the effusions) is responsible. In any case, it's great news.

It's too early to declare victory over PLE but all signs point to the positive - no effusions and his albumin levels are great. When we see Dr. Tarnoff again in 2 months we'll have a stool sample and since it will have been 90 days we can confirm that the PLE is "cured." A Fontan takedown cures PLE like amputation cures a blister.

There is no change for now to Riley's medication schedule and low-fat diet. Before the next visit in 2 months Riley will have a sonogram to look at the clot in his leg. We can expect to go off the coumadin and back onto baby aspirin at that time. We can also expect to stop the low-fat diet.

Make-A-Wish

The Make-A-Wish team visited the house last night. When we spoke with them on the phone, they asked what Riley liked. We told them he likes baseball and cars. When they arrived, they handed Riley a new baseball and bat and four tickets to the Giants-Yankees game on June 24th! They were obviously off to a great start.

Riley had fun acting goofy, playing baseball and generally enjoying being the center of attention. Suzanne and I filled out paperwork while one of the volunteers interviewed Riley in the family room. The forms prepare for all possibilities - everything from driver license numbers and insurance information (in case they rent us a car) to available travel dates and media waivers. Riley talked at length about how he'd like to see baseball games, meet baseball players (he specifically mentioned Barry Bonds, Omar Vizquel and Jason Schmidt) and visit famous ballparks like Wrigley, Fenway and Yankee Stadium. We're not exactly sure what kind of wish they will put together but you can be certain it will have something to do with baseball. We should hear from the wish coordinator in a few weeks with specifics.

Family Camp

Finally, Riley and I spent this past weekend at the Camp Taylor Family Camp in Sanger, California. This is a gathering for kids with heart disease and their families. Carter had come down with a fever on Thursday so Mom and Carter stayed home. We stayed in a tiny cottage and had a blast - playing baseball, singing camp songs and all sorts of games.

Check out the pictures.