Up and Down
Ashley's temperature was up again today.
Ashley's weight was down a little today, but still up about 8lbs.
Ashley's body continues to 3rd space fluids indicating her level of infection remains up.
Ashley's energy level remains down, but she was up a little more today.
Our disappointment over the recurrence of her fever kept me feeling down most of today, but overall I think things are looking up. I'm sure its just the presence of the antibiotics running through her veins, but still I think she's getting better. I just don't know if the infection will be cleared or just held at bay as long as we keep infusing them. The whole fever while having such a high level of antibiotics on board was not encouraging in the overall outlook.
Dave and I are trying to talk. We are trying to discuss what options we have left. Its not an easy thing for us to do. In talking about it all we are forced to stare at the reality of the situation. We want to remain positive and optimistic, but there are times when we feel as though we are just fooling ourselves. Not too long before the rejection of her small bowel last summer one of our physician's had filled out some paper work for us that we were needing. On the line that asked for her future prognosis I glanced at the word he chose to write and I felt so hurt. It read POOR. What? Had he not seen how amazing she was doing? We had been home for an entire year. She had been so "healthy" and was learning and growing and had even begun walking with her walker. What was he thinking? The word haunted me. For the next month I couldn't shake what he had written... And...then...it happened. He was right. He knew something we had refused to believe. I guess through it all, up until her ex plant, I always thought she would come out on top of this "game". I just always did. Since ex plant, I have struggled. There are good days and bad days. Days when I have a defiant confidence and I believe that once again she will beat the odds. Then there are days when I hurt so much as I stare at her face and I know what she's up against. I truly don't know what is going to happen to our Ashley. I just don't know. Its such an awful, awful place we find ourselves in. No idea what direction to go. No peace. No decisions made.
Tonight she sleeps in her own tiny bed with her big brother's baseball in one hand and her arms wrapped around her beloved dinosaur. She has an infected central line, the very last one they say her body will allow, a sick and struggling liver, and no small intestine. She is so unaware of the battle she is up against. She's just precious, and sweet, and so, so little. Tomorrow she will wake up in her own room with Blake's baseball close by and her dinosaur under her arm and she will live another day of her 5th year.
How do we fight this? How do we win? How do we do this? I just want her to keep waking up until she turns 6 then 7, then 8, then 9. Not only do I want her to wake up each morning of those years, but I want her to wake up in her own bed, in her own room, inside of her own home.
I'm up and I'm down. I'm encouraged and discouraged. All at the same time.