Today was a better day. We got Lily's labs turned around, and she had much better color and energy. She took most food today & kept it down. She still flat out refuses any liquids, but I think that might be partly due to being on IV fluids for 24+ hours, and the fact that her IV is in her right, dominant, hand so she can't grasp a cup.
We're HOPING they'll let us come home tomorrow. I think if her labs are stable, she's still taking food & liquid (we're forcing the liquid at this point), they'll let us come home. I also think being in her home setting where it's familiar, routine, and comfortable will help Lily.
My grandma has been diagnosed with Angioimmunoblastic T-Cell Lymphoma, a rare & very difficult to treat form of Lymphoma. If you can spare good thoughts, my family would appreciate it.
2 comments:
Hello- My 2 yr old daughter Nora has(had) IS and we never had to try the keto. ACTH worked for us. I am so sorry the keto is such a struggle for you all. I was reading older posts and saw that you live in Shoreline-is that WA? We live in Seattle, WA. It's so rare to find anyone living near us that has had the same experiences. I hope Lily is doing better and that you all get to go home soon. Lori loridraper@comcast.net
Also, if you want to read about Nora's IS journey go to
http://norafrances.blogspot.com
Good luck
Lori
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