Its getting ugly
Ashley Kate's level of discomfort is getting down right ugly. Her face is twisted. She bites her lip. She scrunches her eyebrows and holds her breath. Things are changing and as the afternoon has turned to evening her level of pain has increased. We are very concerned. At this point her bowel is not distended but it is changing. You can not even get close to her tummy without her screaming. It is very, very tender. Her stool output has decreased so drastically that it has almost completely stopped. I emptied close to 600ccs between 9am and 12pm. Since 12 pm I have only emptied 100ccs. Thats in an 8 and 1/2 hour period. Its getting really ugly.
We wanted her stool to decrease, but to stop or slow that drastically only points to problems. Problems that could easily be very, very serious. Initially we were concerned about a perforation, but now I think we feel sure that there is no perforation. We are leaning toward an ileus. This is basically when the bowel ceases to function and there is no peristolisis(movement) and things just sit still. This is bad. Last year it almost took her life. Once the ileus set in she got nuemetosis(?) and it was very tense in her room for weeks as we wondered if she would survive. We took an abdominal x-ray, and it appears to be clear so we are left guessing as to what is taking place inside of her bowel. I've said it before, when your dealing with a transplanted bowel its just really, really tricky. There is no easy way around these things.
Her rash has moved to her hands. I don't know if you were with us last year at this time(you can search last Octobers posts for pictures, but I warn you they are very, very disturbing), but once it moved onto her hands, by morning the skin literally sluffed off and she looked as though her hands had been burned. She had raw, weepy wounds left and it was very, very painful. My hope is that is not going to happen to her again. We can't figure the rash out. The identical same thing happened to her a year ago and it hasn't happened since until just this week as she battled her rejection. We are guessing it is something her immune system has developed as it fights the rejection or perhaps it is the response her body has to the treatment. Either way it is frightening.
Ashley hasn't rested all day long. She is in pain. She is grunting and moaning. She can't breathe normally because of the pain. She has a very high heart rate and blood pressure. All signs of her discomfort. Narcotics will only cause more slowing of the bowel and won't do anything to help. We are stuck using Tylenol and it can't touch the discomfort she is in tonight. We are also using Benadryl to try and relax her enough in hopes that she will eventually rest.
I can't hold her. She is rolled into a tight ball and crying each time I try to rock her. She looks to me for help, but yet I think she knows there is nothing I can do to make it better. When Ash hurts this bad she sticks her tiny feet up above the crib railing for me to rub them. It somehow distracts or comforts her. It is sweet and heartbreaking at the same time. I rub and rub and rub.
Seeing Ash hurt is miserable. Our sweet baby doesn't understand. It is the hardest thing I've ever had to do. Standing by and watching the bad days play out in her life. I wouldn't wish them on anyone, but oh the joy she has on her good days. When Ashley Kate is good she is so, so good. She has a presence about her. A look in her eyes. They sparkle with happiness, with joy, with love. She is so deserving of those good days. On the bad ones she truly suffers. If only I could make all of her days good. If only I could figure out how to take the pain and the "owies" away from our precious little girl. I do not understand and never will. Ashley Kate pays the price for actions that were none of her doing. The innocent always suffer. They truly do.
In no way am I comparing her to Christ, but its days like this that I am reminded of the price He paid for me. Actions that were none of His doing. He was the innocent. He did suffer. He truly did. I do take comfort in knowing that the God of the universe knows my heartbreak. He watched His child suffer too. He understands the brokenness in my heart.