Not much new to add today. Ashley was exhausted all day long. She didn't feel like going anywhere. We did take a brief outing to KFC to get her some potatoes and gravy. That is the only food the she can eat and not run immediately to the bathroom. Her protein loss is terrible again! Almost everything she eats goes right through her. I know her protein levels are getting very low again. She is having body aches all the time now. Last night, she was in so much pain, she wanted a double dose of morphine. Her legs were so weak, she had a hard time walking to the bathroom. The body aches and increasing weakness are directly related to the PLE. There isn't a darn thing they can do about that. We have her on all the meds she can be on. The IV nutrition didn't stop the PLE, but it did keep her protein levels in the correct range so she wouldn't have the body aches, stomach discomfort, and constant trips to the bathroom. It was a comfort measure, and now that it is gone, I can see just how comfortable it kept her. She is flat out miserable. She is weak, and she isn't able to eat much. Eating is a chore when she does attempt it. Nothing stays in her system. I feel so helpless! I can't take anything away! I can't fix anything! The only tool I have is faith and prayer. Ashley was promised she wouldn't suffer more than she could handle. She was promised the Holy Ghost would be with her, to comfort her every step of the way. But she would have to ask, to pray for that help. Now is the time to remind her of that very special promise.
I do have to say, the weekend coming to a close was bittersweet for everyone. The one thought that lingered in our minds: will this be the last Thanksgiving with our precious angel? We have no idea.
My dear friends and family, treasure up every moment with your family and friends. You never know when someone you love will be taken from this earth. Make every day count, even if it is in the smallest way.
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