Here is her mom's entry on her caring bridge site:
Ok, we are home from St Louis. We made it here late last night. Once again I didn't have any internet access to update, only to read the entries. Kaylee can't believe the support and responses that all of you have left her. They truly have been heart touching. We found out a lot on Thursday night and I have searched for just the right words to post on here to let you all know what is going on. After speaking with all of the doctors and and looking at test results the conclusion was made that Kaylee could not/would not be re-listed to the transplant list. Kaylee completely understands what will happen as a result from that. She knows that God is preparing a place for her in Heaven. For now, we are making the most out of every day, every hour, even every second that she is here waiting on wings. You words are encourging to us all. I can't bring myself to find anymore words to say at this time. As God gives me the right words, I will give them to you. Please have patience with me.
It pretty much says it all. I am just sick to my stomach today with this news. I cannot imagine what her family is going through. She is just too young to go through this<img src="i/expressions/face-icon-small-sad.gif" border="0"> Thanks you guys.