Out the Door
Looks like Ash and I will be headed out the door and on our way to our front door this morning. As soon as the discharge papers are in order and I get us dressed then we will be headed home.
I look at this beautiful girl each day and I can't help but tell God how grateful I am for her. Everything about her reminds me that He is near. Close enough to listen to me cry when things fall apart and close enough to turn her situation around time and time again. He works on our behalf in the little and big things. I've made no secret out of our confusion in her status lately. There are moments that I just don't understand and even struggle to accept His plan for us, but I always know deep in my heart that He does have one. She came through this placement in such good shape and has shocked us all. The placement in October was one of the toughest we have ever witnessed for her and we all kind of expected the same course, but God had different plans in store for her. I am so thankful he did. Instead of 27 attempts with a temporary outcome it only took 2 with a more permanent result. What a blessing!
Ashley is not well. Her bowel is struggling to absorb feedings and she will remain on TPN for a while longer. She still has a cough that has turned from dry to wet that she just can't shake and it causes her vomiting. The combination of stooling out in her ostomy and all of the vomiting from the coughing sent her in the wrong direction. Her fluid status was in trouble last week and we had no idea where we were headed. We knew we were going to celebrate Allie's birthday with her and then we would be going somewhere. Omaha preferred us flying out there, but were willing to accept us deciding to stay local. Dave and finally decided that fluid balance was not a good enough reason for us to disrupt the family and leave again. Local is where we are. Her balance has now been evened out, but she continues to lose a lot of fluid so keeping it there is going to be tough. We will manage the best we can for as long as we can in our home and then if it goes the wrong way again we will be admitted. My hope for Ash is that this cough would leave her body allowing her to keep feedings down. Next I would hope that her bowel would recover from the damage it suffered from the rejection and begin to absorb more of her feeds rather than "dumping" them into her ostomy. Its a very long journey after transplant and it seems as though its never going to smooth out. I hope it does at some point, but lately its been a really rocky path. We came off of the best 7 month stretch in her life and have fallen into this difficult one for the past 5 months. Our desire for Ashley Kate would be to regain the "health" she had found last summer and only improve from there. When she is "healthy" she does learn knew things, achieves more milestones, eats a little by mouth, and is over all the happiest kid you've ever met. Its been a very long time since our little girl has been her happy self. We miss that part of her and hurt for her while she struggles.
Thank you for your encouragement, your prayers, your comments. I read them all and gain much strength from those of you who continue to follow Ash's story. Time to pack it up and get dressed. I hope to be home by noon. Have a great day. Trish