Did you know that a person who has a fontan most likely will experience some damage to their liver? Shouldn't that be something that is discussed with the parent beforehand? I honestly didn't realize that the fontan could cause liver issues. I knew we were checking her liver function once a month because of the bosentan she is taking for her pulmonary hypertension. So it seems that there is some sort of mild concern over the way her liver feels...it feels worse than the last visit. I think he was also concerned that Friday morning, before our follow up appointment, Gracie threw up four times, one in the car on the way to the appointment. She's better now and has a lot of energy. She went to dance class and bowled Saturday at a friend's birthday party. She enjoyed the bowling but enjoyed the popcorn even more. She is still pink but I have that kind of waiting for the shoe to drop feeling since Friday when we saw the cardiologist. The whole liver thing has kind of put me into a quiver. If it's not one thing, it's another. But no matter what the hurdle is, we can overcome, as we always do...with patience and prayer. I watch her and think to myself how amazing she is, not because she is my daughter but because she is out there taking risks left and right and not showing all the major stuff she has gone through. My girl has some serious gumption.
Monday, April 23, 2012
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