Edit #2: It looks like we will not be traveling until this evening. Dave is going to fly in and will land around 11pm. I will pick him up from the airport and we will leave from there. This will give me some time to order more replacement fluid for Ash. We are just now finishing her replacements from last night and it is 5a.m. Time for a little nap before labs. Hopefully her stool slows down today or we may not be traveling at all. My nerves have my stomach upset and I don't want to have to call Blake and Al to tell them our trip is cancelled. Please pray that her output decreases today. Other than a whole lot of stool, she looks amazing! She is now ready to begin her day just as mommy is ready for some rest. Silly Pickle!
Edited: Some have asked how long our pass is. I will get to spend Sat, Sun, Mon., and Tues, at home(as long as Ash's condition is stable) and then I will leave early Wed. morning to make the drive back to Omaha. All in all I am allowed to leave tomorrow(Friday) and stay through Wednesday(but Friday and Wednesday don't really count because I will be driving the entire time.) They will not allow us to stay home because Ash's bowel has not been restored to the point that it was before her rejection. Who knows if it will ever get back to that level of functionality, but until it does we will reside in Omaha, Ne close to her transplant team. I hope this helps answer any questions I may have left dangling in the post.
They did it. They agreed and granted a short pass to go home. The doctor made sure I understood we were no to stay, but that she wanted us back in clinic next week. They have also scheduled another biopsy for Ash next Friday. I don't really know how to describe the feelings that I am having. I guess it really doesn't matter if everyone understands how exciting yet frightening, how freeing yet restricted, how grateful yet still disappointed, we feel. The range of emotions that come over you when you realize that you are still clawing for each and every day of life for one of your children is very vast. When you hold your breath before each appointment hoping to hear good news and the words, "You can move back home" and then they don't come. It has been the most painful, most difficult, most trying, most amazing, most humbling, most incredible, most blessed two years of our lives. This is so hard to put into words. I am thrilled to have been granted permission (although they did not want to give it), but still hurt realizing that we have to return and it is indefinite as to how long.
As soon as I walked back into our room my phone rang. It was Blake. "Did you have your meeting? Are you coming home?"
"For a couple of days but then we have to bring Ash back."
"That's ok, mom. We'll take a couple of days. I can't wait!"
Allie came in from tumbling while we were on the phone. The first thing she said was, "YOUR COMING HOME? YOUR COMING HOME IN TIME FOR CHRISTMAS!" She was so excited.
I had to explain to her that it was only for a few days and then I would have to bring Ash back. I told her I didn't want to push for Christmas just yet.
"Thats good, mommy. You and Ashley come home and then when you get back you can start pushing them for Christmas." This made me laugh out loud.
She talked all about decorating and all we had to do. Her tree, Blake's tree, the family tree, the mantle, the lights outside on the house, the wreaths on the windows, and "the yard". "The yard?" I asked because we don't put anything out in the yard. "YES. We NEED deer or something in the yard." I guess we will be shopping for some yard decorations.
The excitement in their voices blessed my heart. They can't wait for Ash and I to be home. They won't be able to concentrate at all tomorrow. I hope their teaches will understand. Its been 10 LONG weeks since we have been in our home and I can't wait to pull into the drive.
Ash looks great today, but her stooling is a huge problem. She is putting out more than she ever has and it is a race trying to keep up with it all and get it put it back in. We made another change to her immunosuppressant today. We stopped the Rapimune and put her on something called Cellcept. It looks to me like it has fewer side effects, but like any of them it puts her at great risk of picking up an illness or infection. We are using it together with her normal FK and hoping to keep both doses low enough to protect her kidneys, but high enough to provide protection for her organs. Its all such a guessing game.
So I will draw her lab work around 7 a.m. and drop it off, then load this pickle into our car and head for home. It will take us at least 14 hours to make the drive. We will then spend a few days at home and load back up for another 14 hours to return to Omaha. Please pray for our safety while traveling. Please pray for protection over Ashley Kate's health while we are away, and please pray that our time home will be some of the most precious moments we have ever experienced. Nothing taken for granted. Stepping out on faith is what I am about to do. Our family is important and this few days together is absolutely necessary. I will not be posting tomorrow. I will try and share something on Saturday, but if you don't hear from us just know that you are loved and appreciated. Take care my friends. Trish