Coumadin and Fontan?

Riley had another TIA incident today at school. There was a message on our home machine that said, "I think we're having an emergency." I was in SF at the time and drove there as quickly as possible. He seemed to be doing much better when I got there, but was very sad and tired. He also said that he was "hot all over." It is possible that the coumadin could be having an impact on how he is feeling. He has had two doses so far. He ended up staying at the after-care program to sleep.

I spoke with Dr. Tarnoff (cardiologist), and he said that we need to get a referral for a pediatric neurologist for an evaluation, including an EEG. We need to determine if these incidents are actually TIAs or something else. Then Tarnoff started to tell me things I don't want to hear -- He said that he will also need to refer us to a different surgeon because Dr. Karl has left UCSF to go back to Melbourne. And why do we need a surgeon? We need a surgeon because we might need "another chance at the Fontan." And what does a Fontan have to do with TIAs? If these are TIAs, a Fontan circulation will no longer allow any direct blood flow connection between the body and the heart. Recall that Riley's current circulation (the Glenn) allows half of his blood to go through the lungs first and half of his blood flow goes directly to his heart. With the Fontan circulation, all of his blood will go through his lungs first, and not directly into his heart where blood flows directly into his aorta and on to his brain. The reason a Fontan would be good for TIAs is because the blood does not flow so quickly to his aorta and brain. I was not totally clear on that and will learn more, if we head down that road.

In the meantime, Riley will be on coumadin for the foreseeable future "until something new or better comes along or until he has another operation." Tarnoff told us back when Riley was recovering from his Fontan-takedown that someone at some point in the future will try to convince us to try the Fontan again, which I believe he told us we should not attempt. If he has another Fontan, what is to say he will not develop PLE again?

I know this talk of surgeries and PLE is getting a little ahead of ourselves, but it is starting to feel the way it felt in early 2007 when Riley was sick and puffy everyday and I kept calling the doctors to tell them something was wrong with Riley. Something is definitely wrong, and we're not sure what it is.