"Borderline, she's holding her own...

...but nothing more." The words of our transplant coordinator this morning. Not something we didn't already suspect, but hearing them out loud sure wasn't encouraging. The surgical team will be meeting in the morning and they will discuss Ash's case and try and come up with some new ideas.

Dave and I already knew Ash was having a really difficult time healing this go round. She has not bounced back like we all had hoped. Her feed advancement is painfully slow. Her stool output is too high. Her weight is dropping. Her body is struggling and it is beginning to effect her personality. She hurts. Her body aches from necessary medications and a damaged bowel. Her albumin is "in the toilet" to quote our coordinator which is an indicator that her bowel is leaking proteins.

Currently she is on a regime of 3 different immunosuppresant drugs. Prograf(or FK), Rapimune, and Prednisone. All three are being used in an attempt to keep her body from rejecting her bowel again. Problems? Prednisone is a miserable drug. We suspect it is the cause of most of her discomfort and aches and pains. Rapimune inhibits healing, but is needed to stay out of rejection. It also has a major side effect of high stool output. Not something we need to contribute to at this time. Prograf levels are what started this whole mess. Too high and her kidneys will need to be transplanted in a matter of years, too low and her body rejects her bowel.

There are days when I want to pull my hair out right along with Ashley Kate. Knowing that healing is so necessary, yet difficult for her is killing me. She won't survive without this bowel. It is necessary to sustain life. How I wish there was something I could do to make this easier on her. Once again I can do nothing. How helpless we feel.

The good news is that for now we remain home. Home making memories and enjoying life as a family. There is really no benefit to being hospitalized at this time. Nothing more can be done. Unless she goes back into rejection. We pray she does not.

I'm a little anxious to hear what the plan will be. They said they would call us tomorrow and let us know something. I know we will be increasing her caloric intake in her TPN. Other than that I just can't imagine what they will come up with. Or perhaps I don't want to imagine. Your continued prayers are appreciated. Trish