Ashley's Story

She will leave fingerprints all over your heart


Not right

She's not right. Something is still not well with her. My heart is struggling today as I fight the urge to allow fear and past experience to take over. I just want whatever has invaded my beautiful girl this week to disappear.

Ash hasn't had any more fever, but she is having a few episodes of vomiting. She is clammy and yucky. She is so fussy and unhappy. She's not her playful, smiley self. Yesterday her stool output was too high. She required replacements for the first time in months. She is signing "hurt, sorry, hurt sorry" over and over again and continues fuss and fuss. I'm hoping its just a stomach bug, but my heart has a hard time getting believing thats all it could be.

Its just been so many weeks since we have seen her be achy or unhappy. It is breaking our hearts as we watch her just be plain old miserable.

The run down of the week was something like this. Fever came on quickly Tuesday night as we celebrated Allie's Student Council Election at dinner. Ash sat very still and then began projectile vomiting. It honestly came out of nowhere. We had no warning signs. She spent the evening feeling weak and yucky. I canceled therapy on Wednesday morning due to the return of her low grade fever. It came and went quickly all day Wednesday. Then Wednesday afternoon she had one episode of projectile vomiting. Thursday she just felt yucky. No smiles. No giggles. No playing, but no more fever. I canceled all of her classes and therapies on Thursday as well. Friday morning we had to wake her very early for lab draws. It didn't go smoothly for her. She began fussing and being miserable from that point on. I expected her labs to pretty off, but was surprised when most of what I thought to show up did not. It did show us that her platelets are low. Lower than they've ever been post transplant and that her liver enzymes were elevated. past that nothing is out of the ordinary. We went ahead and took her to ride that morning. At first she was unhappy, but took to the horse rather quickly and seemed to perk up a little bit. She was fine as long as the horse was moving, but once it stopped she would be very upset. For most of the day she was just unhappy. Grumpy, fussy, miserable. Very out of character. From 9am till 9pm she was 120ccs over on her output. I replaced it over night. She had a few very small vomiting episodes through the night, but not much to be concerned over as far as fluid losses go. Her output the following 12 hours was very normal. Still today it remains normal. This morning she's just fussy and clammy. Not herself at all. No fevers, no signs of infection from her blood work. Just a personality issue from not feeling well is the only problem we can find.

Its really hard for Dave and I to not see her smiling and happy. We have enjoyed her so much the last couple of months. Its also hard not to allow our fears to overwhelm us. Its that time of year again for her. The last three years have been tough on her during this season and I know what can happen. I'm just praying it hasn't begun and that it doesn't. I am so looking forward to having her happy and healthy this fall.

I want all to be right with her. Its the "not right" feeling and behavior that has us on alert. We are watching closely and praying this is just a stomach bug picked up from all her contact with her teachers, therapists, or perhaps even something the kids may have brought home from school. That in itself is enough to make things go south. Remember any ramp up in her immune system can bring on an episode of rejection.

I have not decided what next weeks schedule will be. If she doesn't improve we may have to keep her classes and things canceled until she is more up to it. Although I hate to stop her progress, I find that we are in such a hard place.


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