One Down

Our first day back in Nebraska is down and to be honest absolutely nothing happened. One of the things we shared with our surgeons last week was the desire to not return and just sit through the weekend accomplishing nothing. A day sitting here is a day away from our children and our home. They agreed on the phone, but this is exactly what took place today. They kept Ashley NPO until 3pm when I finally said, "If were not scoping her today then why are we starving her?" At that time the nurse tracked them down and it was decided that a scope really was not going to happen and we gave her as much water to drink as she wanted. Although frustrating she survived and so have we.

On rounds the surgeon(remember our new favorite?) came in and said, "What are you doing here? I thought we decided you would go to Shreveport?" We laughed and said, "We got stuck in the ER and here we are."

"Well, since your here we might as well run all the tests and try to figure out whats going on, but as far as I'm concerned she looks great." Too bad he's off service tomorrow morning and doesn't get to decide when we leave for home. He did add that he would let the team know tomorrow morning that he feels she is "still sick, but not "Omaha" sick. " He agreed with us that we could manage this back home in Texas. Again, frustrating but we are surviving.

They are going to do another biopsy tomorrow. We have sent more cultures. Stool and blood. We will be testing her for EBV to rule out PTLD(the same type of cancer she had a year ago February) obviously hearing those words caused our hearts to skip a beat. The surgeon followed up with saying, "I'm not thinking this is what is going on, but we need to rule it out." They are also running full viral panels looking for anything to explain her fevers, occasional vomiting, and discomfort. Her stool output is improving and she is at a rate of 60 on her feedings. Basically her TPN should be cancelled tomorrow during rounds. She is still requiring IV fluid replacements, but hopefully not for too much longer. Her cold lingers, but her chest x-ray from yesterday was clear.

Ash continues to struggle most in the mornings. The doctors have no idea why. This morning was no different. The first 2-3 hours of the day she spent not feeling well and vomiting, but by 12pm she was a whole different kid. She played and played with her daddy and had a great afternoon followed by a very long nap. Her nurses can't beleive she is back and doing so well. They said they were all expecting a "train wreck" as were the physicians. That is just not the case and we have been trying to explain that to them over the phone. She is not well, not back to her "pre-rejection" status, but she is doing ok. Healing is proving to be slow, but still Dave and I are confident that she is getting there.

Why are we here? Well, thats a good question. Yesterday morning Ashley Kate woke with a fever(for about the eighth day in a row), began to breathe irregular, and was vomiting. We were in Oklahoma. Half way between our home and Omaha. My main concern was her O2 status. I needed to know that she was getting enough oxygen and the only way to know that was to place a monitor on her. In addition to that, since she does have a cold I wanted to see a chest x-ray to make sure there was no fluid, no plural effusions, and no pnuemonia brewing causing her shortness of breath. My only option was to find a local ER and so that is what I did. Knowing that if she was fine we would more than likely be "stuck" I still had to know this information in order to care for her properly. The monitor showed her sats to be at 97%, her heart rate elevated from the fever, but still ok(it came down nicely after an hour or two). Her chest x-ray was clear, but the ER doc would not release us except to a hospital. I called our transplant coordinator and asked her what they would like for us to do and was told I had to get on a plane and get her to Omaha. Even though all of her vitals were fine, her sats were fine, her heart rate was fine. I had no choice. The surgeon confirmed my decision this morning and said he would have done the same thing. With Ashley's poor respiratory history I had to know the answers to those questions.

In a nut shell, that is what happened and that is why we are sitting in Omaha tonight. Perhaps they will find something and perhaps we could make it home in time for Christmas? I really don't know. If it were up to today's surgeon he said we would be on our way home by Wednesday, but unfortunately he will not be on service this week and so we are basically sitting here until the one on service decides to let us go.

Dave is headed out at 4 tomorrow morning. Blake and Al are still in Oklahoma and will remain there until the 23rd unless Ash and I are released. Ashley Kate and I are making the best out of a tough situation. Even without the slightest hint that it is indeed Christmas. We will have the pleasure of watching the snow fall outside our window tomorrow morning. Were going to be thankful for that. Its supposed to negative 5 at 6a.m. That is so wrong. Things like that don't happen in Texas!

So, we're sad to be here in Nebraska, but happy for the stable condition Ash is in at this time. Sad to be away from our home, but thankful for the blessing of good friends who have given us reason to laugh and smile as we visited today. Sad to be missing Blake and Al, but thankful they are happy with my sisters and enjoying their visit. Sad that Dave is having to leave, but so very thankful he has the ability to work and provide for unexpected trips like this one. Sad to be missing out on the joy and peace found inside of our own home, but thankful that it will be there to welcome us home once again once we arrive. Sad that our sweet baby girl continues to struggle, but thankful for her life and the desire she has to live it to the fullest. Her smiles today blessed our hurting hearts and I am so very grateful she is who He created her to be. There is not another like her and I love her so, so much.

Thank you for your kindness towards us. Your encouraging words and reminders that you are praying for our family continue to bless us. What a gift each of you are to us. May God bless you and your families tonight and throughout this season. Trish