Calif hasn't gotten back to us regarding Sierra going on the transplant list. We understand there are really sick kids at LPCH and Sierra is NOT one of them, thank goodness. They did have us pretty worked up about Sierra's heart conditions, and the need to go back on the list, and they needed to visit with the heart team to confirm the appropriate action. It's been a week and a half now. We are going to call tomorrow and review our questions with them and see where we are at. It would be great if she did not need to go back on the list, and maybe that is what they will decide. We just need to visit with them.
With the addition of this new med, Sierra's puffiness and water weight has stayed down. She has lost about 7 lbs of fluid, and looks and acts good. So we are not feeling an urgency to get her on the list. But, if it's going to happen, let's get 'r going before issues arise. Sierra is on a mountain of meds so who knows how much wiggle room we have.
Having said all this, she and the rest of the gang are doing great. Days are full with school, basketball practices and games, dance practice, skiing, work, church, and living. All stuff we love.
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