It was a whirlwind trip. Very, very long drive with very, very little sleep.
We arrived back in Longview yesterday evening.
Ash is so tired. The trip wore her out! She was awake for 26 hours straight before she ever closed her eyes. She had very little personality and not a whole lot to offer anyone in Omaha because she was just so tired.
The most important piece of information we gained from this trip was being told that the chief of transplant surgery instructed the team to not pressure us in any direction, but to be there to support our decisions no matter what they may be for however long needs be. That was a huge blessing to us and one we needed to hear.
Ash is no better or no worse. Ultra sound did not reveal any new information for us. We are disappointed that there were no obvious answers. Basically its been decided her liver is showing wear and tear as a result of the extended period of time its been processing TPN. Outside of replacing the liver nothing can be done to fix or repair it. We've known that since she was born.
We were in and out of Omaha in under 4 hours time. They took blood, did an ultrasound, and spent 8 minutes talking to us at her clinic visit. A very long trip for only 8 minutes, but its behind us now. We have no plans on returning anytime soon and they agreed that barring any major illness, loss of central line, or severe decline in her quality of life we will remain here in our home with Ashley Kate.
I wish I had more information to share, but I really don't. The decisions we've been facing for the last 2 years are still the decision we are facing today. Ultimately Ashley will lose her life without another multi-organ transplant. Still the statics of her surviving such a transplant again are not high in our favor. Its a no win situation. We will eventually face the day where we hand her over to her team of surgeons and ask them to do the very best that they can for her. For today though we will stay the course. Focus on making memories. Allow her to live her life with joy and laughter. Do our very best to spare her any pain or fear. Above all...be grateful for each moment we are given...and never fail to whisper our thanksgiving to a heavenly Father who created her.
Ash is still sleeping today. Like I said, she's worn out. This afternoon we will have pictures of the kids made for our Christmas cards. I'm hopeful this rest is rejuvenating her little spirit and she might show us a few smiles. Thank you so much for your prayers this week. We made it there and back home. Again its always a gift to pull into our drive way after such a long journey.