Dave slipped out around 4 this morning to catch his flight back to Texas. He will be working 3 very full days in the office and then will catch another flight out of Shreveport to arrive back in Omaha around midnight Wednesday. I told him it wasn't necessary, but he thinks it is. He is going to be exhausted by the time he gets back. I already miss him. Once he left I laid there listening to Ashley Kate as she struggled through a very restless night. She isn't feeling well. Yesterday was a bad day for her. Dave had a really hard time seeing her not feel good. She is different than when we left home and it broke her daddy's heart to see find that she no longer wanted to be held or to play with him. Ash is more content to be left alone. She literally cringes each time she even thinks you are going to touch her. We talked a lot about the changes in her, and we look forward to being home and stringing lots and lots of good days together in hopes of having her return to who she was.
Our visit was really nice and relaxed. We took long walks together, talked late into the night, played games, acted silly, and just enjoyed our days. Yesterday was difficult for me because I knew I would be facing today without Dave. We took Ash out to the zoo in an attempt to distract her from not feeling well, but she only wanted to sleep. The weather was so nice and cool and the long walk around the zoo was calming. There were no crowds and we basically had the place to ourselves. Ash did wake up long enough to enjoy parts of the aquarium. The shark tank is a tunnel that you walk into and the fish and turtles and sharks swim all around you and above you. I think she enjoyed that for a few minutes and then she went right back to sleep.
Her FK level was too high yesterday along with her BUN causing her to be pretty miserable. We gave her a fluid bolus in the afternoon and ran replacement fluids last night so I am hoping things look better for her today. We plan on doing laundry and resting for most of today. She may need another albumin bolus this afternoon and that would cause us to have to get out and go to the treatment center, but other than that we are laying low and listening to our Classical Christmas.
Dave and I put up Ashley Kate's tree the other night. It makes my heart happy and sad all at the same time. Happy to see her purple twinkling lights and pink ornaments that show how much she is loved by those who chose them, but sad realizing it is the 3rd holiday season she has been away from home. Ash has never experienced Christmas in our home and that breaks my heart. I pray that someday she will only have memories of family Christmas' surrounded by loved ones, and that the memories of these early one will only be stories shared with her. How I long for her to be made whole enough to live at home for every holiday that come along.
The details of our meeting basically came down to us sharing our hearts with the surgeon. Reminding them that we were parents who needed to raise our family together in our home. Assuring them that we are willing to travel back and forth even weekly if it meant that our children could be raised together. Letting them know that we are willing to sacrifice our time, our finances, our resources, our anything to bring our family back together. We asked for them to share the time line, the goals, the plan that they had in mind for Ash with us. We sat and visited for a couple of hours trying to get all of our questions answered. We made great progress in the "relationship" that I feel is missing between our team and our family. We are more than just a chart or a number in this hospital. We are people, parents, a family and I am afraid that sometimes the reality of long term hospitalization is that those things are accidentally overlooked. They shared with us that they have a very hard time "sharing" this population of patients with other doctors or hospitals because of the frailty of them and the importance of timing. It all makes sense even though it makes life difficult. The fact that if Ashley needs a biopsy or scope or CT that it can be done in a matter of minutes versus being scheduled a week later when their was an available slot can make all the difference. We agree. This hospital does afford us quick acting physicians who KNOW that timing is everything with bowel transplant and that is why we chose them. So what must happen for us to go home? Fluid balance. Ashley's fluid status is in control of everything at this time. She has made great progress on her feeds and is off of TPN, but she is struggling to stay hydrated without the use of IV replacements. They are not willing to release her to our home as long as she is requiring IV replacements. Ashley's bowel is "leaking" or "spilling" albumin and potassium and other necessary elements. The walls remain weak after the rejection and even though her biopsy shows that the bowel is healing it will still take a while for it to become strong once again. We will need to be able to switch Ash from her IV fluid support to enteral support and pull her line before taking her home. This could happen as quickly as a couple of days or it may take weeks. No one knows. So what happened to Ash causing this episode of rejection? Their best guess is that she got a small viral infection due to her immunosuppression which triggered her high stool output and vomiting leading to less absorption of her FK medicine that then cause her immune system to flare up and attack her organs. They do not "expect" it to happen again. The farther out we can get from this episode without slipping back into rejection the better her chances. She is doing well overall and healing much quicker than expected. The entire team fully expected Ashley to lose sections of her graft, but she surprised them all and pulled out of it without requiring surgical intervention. We are very grateful for that. This has been a very difficult set back for Ash both physically and emotionally. It has also stolen away the progress she had made developmentally at home. Dave, Blake, Allie, and I look forward to getting her back to who she was and then encouraging her to do even more once we are home.
Overall we are close, but yet there are still things that must be accomplished. Our prayers center around her fluid status. It remains fragile and continues to require too many daily changes to take her back to Texas, but as soon as she stabilizes we are out of here. If we lived in Miami, Pittsburgh, or Omaha then we would be celebrating Christmas at home for sure. For some reason God made us Texans and we are proud of that even if it is causing us to spend the holidays apart again. Thank you for praying for our family. We love you and appreciate each of you. Trish