What's in Store for Today

The current plan is to biopsy Ashley Kate around 2:30 this afternoon. I'm not in complete agreement with this because I don't expect that we will get any different results than we have had in the last 6 scopes. I know she is rejecting her bowel. WE all know she is rejecting her bowel, but they just want to look at it again. So...I signed the consent even though my preference would be not put her through intubation and sedation and yet another biopsy. I would like to begin treatment today. Immediately, but that will not be the case. So we will prepare for biopsy and then begin waiting on pathology once again.

She is very, very dry(meaning her hydration) and her kidneys are not peeing. She has had no urine out in the last 14 hours. Her albumin is spilling through the walls of this bowel and so all the fluids we are pumping into her are third spacing(meaning they aren't holding inside the vessels but seeping into the tissues) and she is very, very puffy. All of this makes the whole intubation issue trickier and makes me nervous. Outside of all of this she actually looks pretty good. I mean she's puffy, but her color is beautiful and her hair is messy and her grin is oh so sweet. She doesn't feel that bad and for this I am so, so thankful. Once treatment begins I know things will become much harder on her so I'm appreciating the steadiness of her current condition. She remains fever free and nothing has come back positive in any of her blood or stool cultures yet.

Dave and the kids have a very full and exciting day planned. I spoke with them early this morning and they continue to be enjoying their vacation. My heart is blessed each time I think back to all the fun we had together this last few days. If you had searched the world over you would not have found a happier couple in all the earth. We truly enjoyed our children and our time together. I am working on a slide show of some of what Ash was able to see and experience. It may take me the rest of the day to sort it all out. There are things that she missed out on like her storybook princess dinner that was scheduled for tonight(so I have no pictures of her with any of them) and getting to wear her mickey ears(I had them all embroidered and they weren't going to be ready to pick up until Friday afternoon which was when the ambulance had to be called). I'll just have to fake those pictures once we get home or something, but the joy in her eyes of all that she did behold was amazing. Again, my heart is disappointed but yet still so grateful.

Thanks for still being here with us. I know its hard to understand all the ups and downs of transplant life( especially if your not living it), but it is life and I wouldn't trade a moment of hers. She is the sweetest thing we have ever held and one of the happiest little people you could ever meet. Your continued presence on this journey is a blessing to me and I love you guys so much. I'll let you know whats going on after her biopsy. Take care. Trish