Ashley's Story

She will leave fingerprints all over your heart


A little lighter

This afternoon we got word from Omaha that Ashley's biopsies were clear of acute or ongoing rejection. Instantly lighter. There is no better way to describe it. Just when I felt as though the burden we've been carrying was about to crush me He lightened it a little. Perfect timing.

Lots of things were seen on the biopsies. There are lots of things to be discussed this week. Some changes may be headed our way, but "nothing urgent or immediate needs to take place at this time." Never have we EVER heard those words come from our transplant team after a biopsy. OH, praise God! It felt so good to hear those words. The team is meeting on Friday and will be going over different options for Ash. Mainly the drug Rapamune will be talked about. Do we keep it on board to protect her organ along with her Prograf and Prednisone or can it be eliminated at this time relieving her of the many side effects she is struggling with. Their going to put their minds together and form a decision and let us know. Basically this regime of medications has kept Ash from slipping back into rejection, but it has also kept her very weak, very susceptible, and very ill for the better part of the last 8months. Her quality of life has been severely compromised. So what do we do? Do you protect the grafts at all costs or do you take the risk and restore to our baby her joy, her sparkle, her quality of life? No one ever promised us this transplant life would be easy. I distinctly remember them telling us the exact opposite. It is not easy. Some do fabulous, so struggle for years, and some don't survive. Its a not a life I could ever recommend for another, but I do know in my heart we would do it again. For Ash we would stop at nothing to give her a chance to grow up and be happy. We just have to find our way back there again.

Ash has not been well again today. My car is completely packed with 3 bags for Ashley Kate and 3 bags for myself. I just knew we would be headed somewhere today. We saw her doctor this morning and he stated that nothing more could be done for her at this time. She either has to take a turn for the worse(which we do not want to happen) or eventually start getting better. The doctors did not want her admitted into the hospital because she catches everything in there. They decided they could do nothing more than what they are having us do in our home. IV antibiotics, IV fluids, and trying to make her comfortable. Wait it out and see which way she goes. So that is what we are doing tonight. She began spiking fevers this morning. How she is doing that with all of the antibiotics on board none of us know. We drew new cultures this morning and are just waiting. She's pretty miserable tonight and so it will be another night of sitting up with her, willing her to get well, praying for her to find sleep, and running meds and fluids. Around 4 this morning I couldn't do it by myself anymore. I was so tired I couldn't get one of her pumps to stop alarming and I finally woke Dave and asked for some help. I sat there and cried as he switched out the tubing and got the thing to work again. Why I couldn't figure it out on my own is beyond me. I just think I had run out of ideas,out of energy, and needed a few minutes of rest.

In between the meds changes and fluid bolus' I am attempting to pack. I think I finished packing 3 or maybe 4 boxes at the very most today. Its going to take a while at this rate so I'm thinking how grateful I am that our closing day doesn't come until the end of June. It gives me about 4 weeks or so to get this all done. Then the fun will really begin. The first thing we have to do in our new home is lay floors. Before Ash can live there we have to get the floors down. Just the thought of all of those rooms is overwhelming to me.

So all in all my burden feels lighter tonight. Its still there and I really wish I could figure out that whole lay your burden down at the foot of the cross thing but I haven't. Even after I pray about all of this I feel it weighing me down. Its always there. The most wonderful part of hearing that she was not in rejection was knowing that I don't have to leave Blake and Allie this summer. It feels so good to know that we should be here with them. All 5 of us together taking care of our pickle. Yes, I'm feeling much lighter tonight. Thank you for your sincere prayers and encouraging words. Some days my heart just hurts and there is no getting around it. Goodnight my friends. Trish


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