Ashley's Story

She will leave fingerprints all over your heart


"It will be time to have some...

hard discussions."

Speaking to transplant this morning we are encouraged that her liver is perhaps not rejecting but just very, very sick from this infection. Even though her bilirubin has climbed yet again this morning(now 18 and she is now glowing) her enzymes are coming down. That is encouraging to us all. Once she recovers from this infection it will be time to make some hard decisions and have those "hard discussions" trying to determine why her liver has taken such a hit this time. The assumption is that it will continue to get sicker and sicker until the time comes that she will not recover.

We are currently on the phone requesting an admit for an albumin infusion to be followed with lasix. The only way to pull this fluid back into the proper places is to tank up her albumin and then to allow her to pee off some of the fluid in her tissues. It is very important that we get some of the weight off of her before it transfers into the plural spaces in her lungs. We requested an admit, but our physician is leaning toward having the infusion run over 2 hours, then staying for another 2 for the lasix and some monitoring then sending us back home. We are waiting for a call back to see if we are taking her to the floor or sitting in the ER for the next 4-5 hours. Either way Ashley should be much more comfortable by this evening.

Ashley is very sick, but she is stable. I feel it is very, very important to emphasize that. It is a HUGE praise that our girl is as tough as she is. She is battling a life threatening illness as if she were a warrior and it is simply amazing to see how incredible she does this. I also want to emphasize that ALL of our decisions are being made carefully, with much thought, and complete support and communication with our teams of physicians. EVERYONE wants the best possible life for our Ashley and it is the ultimate goal of giving her quality of life that keeps us all on the same page.

Thank you my friends for your prayers. Thank you for your presence here. Thank you for your support. To know that we are loved, to know that she is loved by so many around the globe continues to bless and humble us. We are so undeserving, but extremely grateful for your kind words.


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