Ashley's Story

She will leave fingerprints all over your heart



I'm taking this whole infection issue a day at a time. I have a tendency to allow panic and fear and past experience to creep into my heart. I am trying to balance that with an attitude Allie carries with her about her sister.

"They always say she can't do this or she cant do that. She's going to die or she's not going to ever be the same. They are always wrong. Ashley will be ok. She always has been and she will be this time too."

I smile when she so passionately shares her thoughts with me. She believes in her. I mean, REALLY believes in her. On the other hand I try not think about the other possibility. Denial? Instead I hope that this positive attitude and hope she carries with her will if nothing else always prove to be true.

Ash feels better. She really does. She looks HORRIBLE, but she is smiling and playing and entertaining herself. She's sleeping a lot too, but between those long naps she plays angry birds, watches Cars, flips through the pages of her favorite books, etc. She is so huge she can't sit herself up or lay herself down. She can't scoot or roll over. I'm not sure exactly how many extra pounds of fluid she has on her today but its in the neighborhood of 10-12. This morning she woke with a wet sounding cough. Her lungs are wet and she's coughing up some really thick mucous from her lungs. As a result of the "wet" sounds we began some IV lasix to help her get rid of some of the fluid. The problem is that until the infection gets under control(which in some ways it is and others it is not) she will continue to third space fluid into her tissues and out of her blood vessels. Its just how her body is reacting to infection these days. Her albumin is very low and usually we would explain that by saying that when she has an infection the walls of her bowel become weak and it spills albumin causing her level to get so low that fluid seeps from her vessels into her tissues. That theory doesn't really work anymore since she no longer has a bowel, so I can't tell you why her albumin tanks now. I just know that its because of the low level that she third spaces.

I say it is and isn't under control when referring to her infection. It is by way of temperature and feeling awful. Those are better. Normal almost. It is not by way of blood cultures that continue to come back and tell us the bugs are still in her blood stream. She remains on 3 different IV antibiotics. Add to that her TPN, Omegaven, and now lasix and its getting back to a schedule that allows for very little sleep if any at all. I'm trying to focus on the future. The near future that brings with it a birthday celebration for a very precious almost 6 year old. I'm looking for professional clowns in our area(striking out so far. I want the kind who are in full costume, including painted faces and all), face painters, and a magician. All are needed to pull off this years celebration. We have a lot of the prep work completed as far as props go from all the work we did last summer before she got so sick, but I've got lists and lists of rentals and other items that I still have to secure. I'm better when working on a project. It gives me something to focus on besides infection and transplant. So the invitations were ordered today and those of you who live anywhere close to us should be looking for them soon. We have friends and family attending from Oklahoma, Texas, and Louisiana. If any of our Nebraska friends would like an invitation all you have to do is send me an email. Hey, its only a 14 hour drive. Not that bad is it? I'm really looking forward to having everyone together again in celebration of the life our Father has blessed Ashley Kate with. Last year we had 85 guests attend her party all the way in Omaha! It was an amazing day. We were surrounded by such love and support. I'm just so excited about it.

So that how things are happening around our house today. A very swollen little girl and a very tired mommy. Add to that workout schedules for both the big kids, soccer camp, and another baseball tournament this weekend and that about sums it up. Oh yeah, the birthday planning makes it complete. I hope to make a couple more slide shows from our trip and complete that part of the journal soon too. Maybe tonight while I wait on her meds to finish up.


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