Tuesday February 16, 2010

Today has been another long day. Seems like that what we have anymore. But at least we had a little bit of sunshine. What a blessing every ray is these days! When Ashley woke this morning, she felt good enough, she wanted to eat. She came out into the living room for a little while. She was able to down two small hamburgers, some cheese, a popsicle, and a piece of bread. And the best part was, she didn't have diarrhea for nearly an hour after that.

Also on the good side, her face looked almost normal. The swelling around her eyes and in her chin was down. Her legs, well, that is another story. They were swollen and painful. She has continued to struggle with leg pain. I did talk to Dr. Etheridge this afternoon, via email, about this never-ending leg discomfort. She said PLE can cause clotting problems, so it is likely Ashley could get a blood clot in her legs. She feels part of the pain could be associated with low calcium levels. Her suggestion: have Ashley take in more calcium, particularly at bedtime. There isn't much we can do to prevent clots. Ashley already takes two aspirin every day. We can't increase that. I wouldn't anyway. Aspirin in itself is hard on the stomach. Her aspirin are coated, to help with the stomach discomfort they could cause. But she certainly doesn't need a higher dose.

Tonight was just miserable in every way. Ashley was tired and very uncomfortable. She was hungry and did attempt to eat, but then had to fight with diarrhea. She was severely out of breath. Every time she got out of bed to use the bathroom, and climbed back in bed, (a distance of only three steps), she would have to sit and pant to catch her breath again. Between the leg pain and the shortness of breath, Ashley was a wreck! She asked me tonight about increasing her lasix all the time now. We know it is time to do that when she can't breathe well anymore on her current dose. She takes 2.0 mL three times a day on a regular basis. We have been bumping her afternoon and evening dose to 2.5 mL, but it looks like we may have to go to 3.0 mL, which is the max dose she can take based on her weight. I will talk to Nancy about that tomorrow.

The one good part about tonight, Ashley fell asleep for almost an hour and a half. I kept checking on her. She looked so peaceful. For a short time, I know she wasn't suffering. Once she woke, she wasn't happy, but what a blessing to have a little rest from her burdens. I hope she will be able to sleep tonight. Last night was much better. She was up two times. That was also another blessing. The stupid diarrhea stayed at bay. I hope tonight will be equally good. We like to sleep! Ha ha ha! (0: Oh and on another note, I have another sick one. Preston was sick last week, and now Spencer is sick. Poor kid! He was home all day, but he was like his brother, very cautious about coming downstairs. We will keep praying the sickness won't go around the entire family. We have to keep our angel well!! This virus would kill her. Lots of prayers to be said!!