It's Official

The experts have gotten together and it is official as of today: Fiona has biliary atresia! No more guessing or wondering. This is the same diagnosis she has always had but everyone keeps questioning since she is so different from the textbook case. This doesn't change anything. The treatment, no treatment, is the same. We are basically waiting for more serious symptoms before anything else will be done. LIMBO is not a great place to be. Just when we think we see the light at the end of the tunnel, something happens and she gets pushed back in further away. Let's hope the next few months go well and she can become more active and productive.

The emotions of sad, mad, angry, frustrated, hopeful, hopeless are just some of the feeling we are going through. The roller coaster goes really fast some days and slower others. The most frustrating thing is to think you are making progress to only find out you are at the beginning again. So easy for the doctors to say "I don't know" and go home. Patients have to live with their problems. I know we aren't the only ones dealing with serious chronic conditions but I will say, we aren't going to just take "I don't know" as the answer. It is time they figure this out.

Fiona called the original surgeon and has been talking to him. He said that she has never fit the textbook definitions. She is just unique. But he did say he has the same questions we do: why are her platelets low, why are her lungs bleeding? He agrees they don't know and I told him that wasn't good enough. He agreed but the tests they need to do are too life-threatening to complete. So we wait for the symptoms to get worse and decide then if the tests are warranted.

I did ask him if they ever studied her lungs when she as a baby and he said he looked and they hadn't. I told him that it would be so helpful, once a baby is diagnosed with biliary atresia or some other condition that they KNOW usually effects other organs, to do a complete study when they are little. It would eliminate all those problems and questions when they get older. He said, "Well how would that change her treatment now?" Basically we wouldn't have to stop and reprove everything. If it was there at birth it is part of the original damage. If it wasn't, then something is causing the change. Seems simple to me, but guess it isn't.


Peg