Waivering

Tonight Ash made one of the biggest messes of her life. It was SO frightening! She was shiny clean and smelling delicious after her bath when I put on her purple p.j.s and "tucked" her into her crib in our room. Dave and Blake were watching the home run derby in our room when all of a sudden Blake came running out of our room. His face was very, very pale and I thought he was going to be sick. Then out came Dave with our gherkin in tow. He wasn't carrying her in the normal cuddly was he usually does and I immediately knew something was wrong. He had picked up the corners of her blankets and she was kind of laying inside of them, but he was being very careful not to touch her. As they got closer I saw that she was COVERED in bright, red blood. For a brief moment I felt fear and panic as I tried to process what I was seeing and then I just went into action. Towels on the floor, wash cloths and ostomy supplies quickly followed. As Dave worked to clean the blood off of her face and hands I asked, "Have you even looked at the bowel yet?" "NO", he replied. Her purple jammies were no longer purple. They had turned a crimson red. "How in the world could she do so much damage in such a short amount of time?" I wondered out loud. I promise it had not even been 20 minutes since her bath. No more time for questions as we worked on cleaning up our Ashley together. Once the bowel was exposed we examined it and couldn't figure out exactly where all the blood had come from. She obviously had been tearing into her ostomy bag, but we couldn't find any obvious damage. I have been watching it making sure that it hasn't turned dusky or pale. It seems to be functioning fine, but I think I will probably be up all night looking at it just in case. After we cleaned her up I went to check on Blake and assure him that she was ok. He told me he just couldn't stay in there while all that was happening. He worries too much about her. Once he knew she was all cleaned up he came out to check on her and place kisses on those puffy cheeks.

So now what? I thought we had decided to wait on her next operation(the one that would reconnect her exposed loop of bowel), but what are we to do? I have been wavering back and forth for over two hours. I have reasons for wanting to wait. Good ones I thought, until tonight. As I go through my mental lists of reasons why I would like to wait I wonder if I am just being selfish. If her operation is to be done the latest it would be scheduled is September(in order to avoid the flu season. They really don't like the transplant kids to be exposed to all of those bugs during the fall and winter months). If it is done in September I will definitely be gone for Blake's birthday. That would make 2 years in a row. The kids will have to settle into their new classrooms and adjust to their new teachers and responsibilities without me again. That was very, very hard on them. There is a very good chance that Ash and I could still be in Omaha during the holidays. That would make the 3rd year in a row of celebrating Christmas in the hospital. Then there is my most selfish reason of all. I want more time. More time with her. I am not emotionally ready to walk this uncertain path again. It really terrifies me.

What is better for Ashley? I have no idea. The ostomy is a pain for her. It also causes her pain when the skin around the bowel breaks down. She tugs and pulls at it trying to get it off. I have a good suspicion that is what happened tonight. You can't see the broken down areas of skin unless the bag and wafer are off. I checked to make sure it was clean and secure during her bath tonight, but obviously I couldn't see the raw areas of skin that got to her just a few moments later. Would it be easier for her if we had the take down surgery now in order to make her more comfortable? I am afraid that the older she gets the more episodes we will have like tonights.

The transplant coordinator told me that its usually the parents that are in a hurry to get it done. They want it over with and behind them. Until tonight's events I didn't really understand that. The coordinator said they were fine with waiting until next summer if we wanted. We all kind of thought it would be nice to give Ash a little time to just be Ash without surgeries, chemo, and all the other setbacks. We would like to just allow her to be a little girl for a while. Now I don't know what to do. I'm not feeling peace about either decision. I think we decided it will have to addressed and discussed again next week at our check up.


So I am wavering back and forth. My heart is heavy tonight with such a large decision looming before us. If we decide to go ahead with it this year we would only have a few more weeks here at home. The thought of that makes me sick to my stomach. The knowledge of the surgical complications and risks of infection associated with this surgery don't help my upset stomach. I am really hoping for a clear sign from God that allows me to know that what is decided is inside His will for our lives. Tonight I don't see any signs.