Ashley's Story

She will leave fingerprints all over your heart



Its impossible not to feel it. It doesn't matter that I know deep down inside that I do everything in my power to be as careful as possible. I still feel it. Its an overwhelming feeling that makes me ill. My stomach is in knots as I lay here on this couch and attempt to sleep.

When I handed Ash over to the surgeons' arms on the night of transplant. I felt it. It was my choice. I was responsible.

When I heard the code come across the speaker and saw the crash cart being pushed down the hall. I felt it. I had signed the consent. I did it. It was my choice. I was responsible.

When I noticed she wasn't herself last night, drew the blood cultures, and cleaned up her vomit. I knew. I'm the one who cares for her line. If an infection is to be found it got there by my hands. I felt it. I was responsible.

I can't explain the enormity of the burden I feel when making decisions about Ash's health care. Its usually me who has to put my signature on all of the consent forms. Its usually me who has to manage her daily meds and line care. Its my job and its not an easy one. Loving my daughter is easy, being the one the buck stops with is not.

As I have watched her go in and out from her happy self to feeling miserable all through out today I have felt it. That whole responsibility thing. Its crazy. I know I didn't make her sick, but I can't help but question the when, where, or how this bug has gotten into her blood stream. At what point did I screw up? Its not a little bug. Its an ugly bug. Gram negatives are nasty. Everyone is tiptoeing around wondering if it was caught early enough for the drugs to do the trick or if she's going to go down hill. "Time will tell. We will manage her clinically for now. She'll
either respond or she won't and we will know at that point if she needs to move on." That means transfer. I know what he meant.

All day we have watched as her fevers spike. Her little body begins to shake. Almost seizure like. Brought on by intensely high fevers that shoot up. She has no ability to control the shaking. Its scary. She feels so bad during those moments she just moans and shakes. I sit and watch and feel it. I'm responsible. At least thats what my heart feels.

Then once the fevers break she returns to her happy little self. She sits on the bed, reads books, watches Blue, signs, and asks for drinks. Lots of drinks. You would think she was on the dry side of things by the amounts of water she is requesting, but her BUN and Creatnine levels were beautiful today. The only out of whack area on her lab work was an increase in her white count which confirms her infection. Some of her electrolytes were a little off, but not by much. Easily correctable at this point. I'm hoping it stays that way.

I wish this weren't happening. I have no idea how things are going to go. Hopefully we will get a handle on all of this, her fevers will stop, and in a few days we will be back home running IV meds every 8 hours instead of in here. Thats what everyone is hoping anyway. Lets make this as easy as possible. Please. As easy as possible for Ash. Thats my prayer.

With the next fever spike we have to draw more blood. She's sleeping peacefully at this time and if she could just keep from becoming febrile through the night then no one will be poking her veins looking for blood. I'm hopeful we'll make it through the night without waking her up in this manner. Again, I will feel it. Responsible.


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