Ashley's Story

She will leave fingerprints all over your heart


Trying to Keep her going

Tonight I had the honor of watching Blake play basketball in Nacogdoches. It was an awesome game. He played great as did his teammates. So fun to see them win. So fun. My favorite part of these away games is the drive home. Sounds silly I'm sure, but its on those drives home that I get to talk to my 15 year old. Its the highlight of my week. We talk about everything from what he'd like to eat to what is happening in the world of high school freshmen. I just love this kid. Absolutely love him. Tonight we spent a lot of time talking about baseball, Valentine's Day(making plans for his girlfriend. Lucky for her he has a mom who can remind him that its on the 14th and NOT the 16th! He cracked me up.), music, and Ashley Kate. We always seem to visit about Ashley Kate on these drives.

I was playing phone tag all through the game with transplant, pediatricians, surgical teams, and the lab. It was an array of phone calls with lots of trying to figure out what is actually happening inside that central line of hers. On the drive home I was relaying to Dave over the phone about what I think everyone was talking about. To be honest I'm still a little confused.

At the end of this phone call I took a deep breath, tried to organize my thoughts, and then said to my son, "I'm just trying to keep her going. Going long enough so she can grow up."

"So far mom, I think your doing a great job of that."

Little does he know what that comment did for my weary heart. His confidence in my ability to take care of his baby sister and his belief that we are in fact doing what is right was the confirmation my heart needed to hear this week. I'm telling you I LOVE this kid. LOVE, LOVE, LOVE him. He has a way of making my heart smile as we travel home each week on those dark stretches of highway.

So blood cultures were drawn last Thursday to see if her line infection had cleared after treatment. Saturday morning something grew out. Everyone, other than Dave and I, believed it was a contaminant and not an infection. She was symptomatic. Text book symptomatic. After two doses of treatment her clinical presentation began to improve. Sunday passed. No ID, no more growth. Monday passed. No ID, no more growth. Late this afternoon, more growth in the other culture bottle. Clinically, she presents just fine. Now we are being informed that 5 days after drawing the culture a gram negative something has grown in the second bottle. So we have a gram positive in one. A gram negative in the other. Not good news. Not good. It was decided since her presentation is good, and since I have already scheduled an appointment in Shreveport tomorrow with that team to check her for a possible pneumonia developing from what started out as cold symptoms, that we could keep her home tonight and wait until they put their eyes on her tomorrow. What does all of this mean? Well, its confusing. Both cultures may not even be accurate. We were out of town when the infection was discovered and were not able to draw a second set of cultures for comparison. We had to make a tough decision. Wait on treatment and possibly lose the line until we could get new cultures drawn, or go ahead with treatment, get a jump on the infection, and help Ash to start feeling better. We chose not to wait until making it home to draw new cultures. We began treatment to try and save the line immediately. Now we are dealing with only one set of cultures and not a very clear picture of what is going on.

So all of this equals the confusion, the multiple late in the day rounds of phone tag, and my comment to Blake tonight that I am just trying to keep her going long enough for her to grow up. UGH! Some days are just hard. Really hard.

Tomorrow we will go back to Shreveport for a clinic visit so the docs can put an eye on her. I just want to be sure this is a cold and nothing more. She looks so swollen and heavy and I want a chest x-ray to make sure nothing is brewing in those fragile lungs. Ash is actually feeling better this afternoon and evening. She's looking much better than she has in the last couple of days. I'm hopeful this trend will continue until she is back to her happy little self. I find it hard to imagine her having a gram positive and a gram negative infection in her one and only life line. Looks like tomorrow we will be adding coverage for both. Just in case the cultures are accurate.

It never gets easy, but I can assure you its always worth it. She is so worth it.


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