Concerns

Back up in the room and Evie is getting a bit cheerier, watching Merida. We’ll redo the Meckels scan (like we did in Cincinnati in November) sometime. We’ll resume her Vest treatments to make sure the shaking doesn’t restart the bleeding (or maybe TO get it to start up again).

The concern for us at this point is that every episode has Evie exhibiting FEWER signs that she’s in pain, but has GREATER physical ramifications. When they started back in July, she clearly showed enormous amounts of pain, but all of her labs stayed fairly stable. In November she showed less pain and seemed to just be uncomfortable, but became septic from her gut, which indicates that there was in fact quite a bit of damage in there. This episode, she had black tarry stools, but seemed perfectly fine, though she WAS tugging on her hair and pulling bits out. Other than that, though, she was playing and active and (mostly) happy. And yet, she lost enough blood to need a transfusion! We’re scared of what will happen with the next episode and whether or not she’ll show any signs. Please just pray we can come up with a plan to locate the damage!

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