Updates from the cardiologist

Riley had a follow-up appointment with his cardiologist last Wednesday; he will have another appointment in two weeks. Here are the updates:

1. When we go back in two weeks, Riley will have the following tests: x-ray, echocardiogram, and a blood draw to check his electrolytes, globulins, albumen, hematocrit, and INR (to make sure the finger stick machine is accurate).
   
2. We hope the PLE will fade away now that Riley is back with the Glenn circulation. The albumen test should be an early indicator of whether or not it is gone or going away.
   
3. Riley will continue on the appetite stimulant until his regular pediatrician decides it's time to stop. Dr. Tarnoff estimated that would be in about a month. Riley says he's hungry quite frequently. However, when he actually gets the food in front of him, he often only eats a couple of bites.
   
4. Riley's oxygen saturation was in the mid-70s. When it dips into the 60s, it will be time for the fistula surgery. That is the primary determining factor for the timing of the surgery. Apparently the fistula and the surgery for the aortic pulmonary shunt are two different surgeries. The aortic pulmonary shunt will connect his aorta and his pulmonary artery with a gortex shunt. Both of these surgeries will likely make his already leaky valve more leaky. "With every gain, there is a loss," said Tarnoff. If the situation with Dr. Karl at UCSF is not resolved by the time Riley needs surgery, Dr. Tarnoff said that another surgeon could perform the surgery. Also, the fistula is not open heart surgery. The surgeon will go through Riley's ribs on his side. For the aortic pulmonary shunt, the surgeon will go through his back.
   
5. In one or two months, Riley will have an ultrasound on his leg to look at the clot. We would expect to find that either the clot is resolved or the clot will be calcified and no longer at risk for breaking off.
   
6. We have been taking Riley to his pediatrician's office for the finger sticks to check his INR (clotting factors). We tried at home the first day and I did not have a large enough sample to get a reading.
   
7. We have heard that Stanford often rejects kids with complex defects at their transplant center. Stanford is obviously the most convenient center for us since we live only 20 minutes away. If Stanford does not accept him, UCLA will likely be where we end up. Dr. Tarnoff said that they "accept almost everything." The downside of being accepted at UCLA is that you need to be within 30 minutes of your transplant center at all times. Then after the transplant (if an organ is found), you need to live near your transplant center for at least a year. We have an informal meeting with someone from the Stanford transplant center later this week.

Finally, Riley was able to celebrate his birthday over the weekend. He invited two friends over for pizza and non-fat ice cream cake from Baskin-Robbins. It was not a cake with a matchbox car on top, like we saw at the store many months ago. It was a Bob the Builder cake, and Riley seemed perfectly happy with that. He is also doing a great job walking. He's not fast or agile, but he's getting around. We still mostly carry him up and down stairs, he is tired a lot, and he is sleeping 13+ hours a night, but we are all home for now and that is a wonderful thing.