Ashley's Story

She will leave fingerprints all over your heart


He's NOT going back

That's the word from home tonight. Dave and the kids just walked in the door from an attempt at grocery shopping. From the sounds of it I think it was a disaster. The kids couldn't decide what they wanted to eat this week and they decided they wanted something different in their lunches but didn't know what. Dave is ready to pull is hair out. I think the three of them wandered around and around with their hungry bellies and ended up with a lot of odds and ends that don't make into a meal. He finally said, "If anyone sees two skinny kids and their hungry dad walking around just tell them to ignore us because I'm NOT going back." This had me giggling. He just wants us to come home and do the things we are supposed to do like...feed them.

This is just one of the hard parts about being away from home. Knowing Dave is now responsible to be Mr. Mom as well as Dad. He told me at lunch time that his plan was to spend a few minutes each lunch hour picking up, throwing in laundry, or doing dishes and the same each evening when he comes home. "No more relaxing and being lazy " is what he told me. Blake and Allie are responsible for their own laundry(except for ball uniforms) and since Ash was in the hospital all last week they spent their evenings up there and didn't do any of their clothes. So that means they are wearing dirty school uniforms. I feel like such a good mom! Surely I will be voted mom of the year because my kids are going to be not only hungry but dirty!

Ashley's scope tomorrow has us nervous. She has been scoped more times than I can count in the past two years since her transplant, but the one time it went poorly was when she was in rejection last year. The memory of those days have me more than nervous about tomorrow. When we arrived last fall her many of her symptoms of rejection were very similar to what they are now(all except for the rash and the fever). It wasn't until after her biopsy that the "really rough" days began. After the scope she developed what is called an ilius. Basically the bowel stops working. No movement. No output. The bowel is "shocked" and refuses to allow anything out. There are no bowel sounds heard and the belly area swells up. The pictures of Ashley Kate during those days are some of the most frightening to look at. As she was suffering from the ilius she developed what is called neumotosis. This is when the bacteria in the bowel leaks into the wall of the intestine and goes through its normal life cycle while embedded there. It breaks down and produces pockets of gas in the actual wall of the intestine. Extremely dangerous. It was on this day that I was asked to call Dave back to Omaha if he wanted to see her again. Honestly, it was the second hardest phone call I have ever had to make(the hardest being her cardiac arrest). Its the knowledge of what could happen to her again that has me nervous about tomorrows scope. Her bowel is in a fragile state. It is "friable" and angry from the rejection. Introducing anything else could put us back to where we were last year, but there is no other way to figure out if the treatment is working or not. It has to be done. There are no options. I'm just praying for positive results to come from it.

Ash is so restless tonight. Her bowel is very upset and she is cramping a lot. I don't think we will be getting much rest tonight. Her tummy is just too angry. I can hear it all the way across the room. I think I will just hold her close to me and rock her for most of it. It seems to be the only time she settles a little. I'll rock all night if it helps her in anyway. I'm just so thankful she's is here and I have the opportunity to rock her. It brings such healing to my heart as I feel her breath in and out on my chest. The smell of her hair and the lotion on her skin are so, so sweet. These days are hard ,but still they are precious.

Goodnight my friends. Your time here means so much to us. Thank you again and again and again. Trish


Post a Comment

Subscribe to Post Comments [Atom]

<< Home