Ashley's Story

She will leave fingerprints all over your heart


My phone

It rang and rang and rang today. Calls came in from everywhere. Everywhere that is that has a front row seat in Ashley Kate's care. Omaha, Houston, Shreveport. Yup, all three. Once our "weekly" labs were sent to them(today was our regular lab day even though we've been taking daily labs for the last 6 or so) they all took notice and made calls. What am I supposed to say? Yes, I saw the culture results. Yes, I know she has a very stubborn staph infection. Yes, I know she needs an echo. Yes, I know her liver is sick. Yes, I am aware of what her lab values are. Yes, she is in the hospital. Yes, I have talked to transplant. Yes, I know we CAN NOT have her central line removed. Yes, yes, yes, yes, yes. I get it. I really do. I would venture to say that I GET it more than anyone. Its all I think about. It consumes my thoughts. Awake or asleep. I SO GET IT!

On the other side of all of this I would like to report that Ashley's vital signs ALL remain stable. Almost text book perfect type of stable. Its all so crazy.

The scariest thing is( I mean if it can get more frightening then having her last central line colonized with a staph infection) is the reaction her liver is having to this infection. It has every one concerned, but yet NO ONE has an idea of what can be done about it. As far as I have been told nothing can be done. We will just have to wait and see if it turns around and begins to heal. If it does not I have no idea what we will do.

She did have an echo done this afternoon. I stared at the screen for awhile and it was beginning to make me crazy and so I put my focus and my attention on Ashley's face. I held her hand and talked to her about what a big girl she was and how still she was being for us. I let her know I was proud of her again and again and again. I have no idea what if anything was seen on the echo. I didn't even ask. I figured one more day of not knowing was one more day of having nothing knew to worry about. I know I'll hear the results sometime tomorrow. I've got enough to think about tonight.

I was told in rounds today that as soon as a negative culture comes in that we are being discharged home. I didn't argue that decision. In fact I didn't say anything. I didn't know what to say. As you can see in her photos Ashley is a scary shade of orange/yellow. I've never seen her look quite this bad as far as her coloring. Still though her enzyme and function tests are proving that the liver is still functioning. Its just not functioning correctly. The general hope is that it will turn around once the staph is treated effectively. She tires easily and aches all over. Bilirubin smells awful as it seeps through your skin. Her urine glows in the dark. Her tongue is so weird looking. Her eyes leak yellow drips of fluid. Its all liver related. BUT...she is cleared for coming home as soon as that culture tells us we are effectively treating the infection. Her physician said it could happen as soon as tomorrow.

Ash lost two whole pounds today. Dave and I had her weighed tonight because we noticed a change in the size of her feet. They looked a little smaller and we were able to buckle her seat belt in the power chair around her waist tonight. We knew something had to have changed for that to be possible. I was so excited to see the two pounds of fluid loss. I can't wait to have my tiny 39lb girl back! She was 51 lbs point something tonight. Moving in the right direction.

I came home tonight. Dave and my mom are both staying with Ash tonight up at the hospital. I have added an additional 3 nights of no sleep to my running total and I'm not holding up that well. They insisted I come home to rest in our bed tonight and spend some time with the older kids. I couldn't even put up a fight. I am that tired. I will take the kids to school tomorrow and then switch places with them so Dave can go to the office and my mom can come to the house to rest a little bit.

I don't know what is going to happen from day to day. I'm just keeping up with the moment to the best of my ability. I felt encouraged today by the small amounts of progress that Ashley Kate made. I felt frustrated and frightened by all the phone calls and the level of concern in every one's voice. I know things are bad right now. I just didn't need to have it confirmed again and again and again. It made for a rough day on this mommy's heart.

FYI...I turned off my phone tonight. It needed to be charged anyway:)

Goodnight my friends. I'm going to try and get some sleep.


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