Back from our Make-A-Wish trip

We're back in the Bay Area after our trip to Baltimore, Washington D.C. and Philadelphia. We'll have a complete Wish wrap-up with lots of photos soon, but in the meantime we wanted to whet your appetite with these.

Wish update: Riley in the newspaper!

The Make-A-Wish team delivered Riley's wish this week! A reporter and photographer from the San Mateo Daily Journal were there to document it all - check out the article.

We're overwhelmed by the itinerary - in addition to watching the Orioles game, we'll be getting the royal treatment from MAW and the Orioles organization. Riley will get a special front-row seat for batting practice, a tour of the stadium and an opportunity to meet some players. We'll visit a sports history museum, the Babe Ruth Birthplace Museum and take a harbor tour. The wish volunteers brought t-shirts, a special suitcase for Riley filled with goodies for the trip and a delicious cake shaped like a baseball stadium. Our little guy enjoyed being the center of attention and got sillier and sillier as the evening went by. He's really looking forward to the trip.

We had an echocardiogram and a check-in with the cardiologist earlier in the day. There is no sign of the PLE and his chest is completely clear. When we see Dr. Tarnoff again in a few months we can officially drive the final nail into the PLE coffin, assuming everything still looks good. We've been concerned of late because Riley's mid-morning tummy aches had returned. Continuing to suspect his medication, Dr. Tarnoff suggested we try giving Tums at medicine time.

Riley's valve is still "only mildly leaky." His O2 sats were 82%. We're also off the coumadin and back on aspirin. That means no more finger prick blood tests and the flaky machine that goes with them (the test probably failed one-third of the time, requiring a second stick).

We also got a more detailed explanation about the Glenn circulation, and why we should expect Riley's saturations to eventually decline and require more interventions. A newborn's heart receives approximately 66% of its blood from the upper half of the body and only 33% from the lower half. For an adult, that ratio is almost exactly flipped (babies are pretty much all head). Since Riley's superior vena cava routes blood to the lungs but the inferior vena cava returns blue blood, the overall saturations will decline as Riley grows and the upper/lower circulation balance shifts toward the lower body. Dr. Tarnoff indicated that we'd be looking for saturations in the 60s before we move toward more interventions (recall that we can try some additional fistulas and shunts to boost his oxygen level before proceeding toward transplant).