Ashley's Story

She will leave fingerprints all over your heart


Not much to say except...

...she's really sick. Our sweet baby girl is in the middle of some nasty virus that has stolen her spirit. Her eyes are so, so sad. Her fever remains a little over 101 and has been that since returning from her scope yesterday. She is hot and feels awful. Nothing is bringing her fever down. Her stool output is very high. I emptying about 300cc every 2 hours. Her tummy is cramping and you can hear the bowel rolling as it empties fluid into her ostomy bag. Her face grimaces in pain. She isn't crying. To be honest she feels too yucky to cry. She is just tiny and frail. Her eyes are the part that make me hurt. She has no sparkle. No joy.

We have sent more blood cultures.

We are suspicious of something called C-DIF(?) I'm not familiar with it really. Ash has never had it. Usually the kids get it when they have been on multiple anti-biotics and the "good bacteria" in their guts have been killed off. Then the "bad" bacteria takes over and that's about all I know. The funny thing is that Ashley Kate hasn't been on an antibiotic for almost a year. She shouldn't have this virus except that she is so immunosuppressed right now that she could have picked it up here in the hospital. They told me today that a few kids do that. She doesn't have the typical smell of this virus, but the cramping leads us to believe she still may have it. Nobody really knows yet. This is just a guess, but her symptoms sound like it.

She is weak and snugly. Not having enough energy to stand or move. She just sits on my lap and cuddles for hours on end. I'm not complaining about the cuddling part. She had gotten out of that habit at home because she would rather be down and moving. I just wish she felt better. Still she is very, very sweet.


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