Ash is on dose number four of her antibiotic this morning. I drew a trough level at 5 this morning and Dave took it up to the hospital for me. We are using a broad spectrum for grand positives right now since there are no sensitivities back yet. So far she continues spiking fevers. She is still bleeding from her ear and now her nose as well. It in combination with her cold is making it tough for her to breath. Other than a higher than normal heart rate and her fever all vital signs are stable. Her oxygen sats are good and blood pressure is fine as well. There was no talk about removal her line. The hope is that whatever is in there will be taken care of with a course of antibiotics. I think she has a had a decent night. She went right to sleep in her bed and has been able to sleep through most of her cares. You can tell she is resting much better here than she has in the last few nights. Her neck and chest are still hurting. She showed her cut down incision to Allie and signed it hurts. It was very sad.
Honesty here in this place, this account, this experience of ours is what you will always find. I realize there are times, days, journal entries, that are hard to read. They are hard to live as well. Nothing that I say is not true. Its the facts. Transplant is not a happily ever after. There is no fairytale ending in the lives of transplant patients. Yes, it can be life saving...unfortunately in the world of small bowel transplants it can also be life ending. Its not something any family enters into lightly. When you find yourself discussing bowel transplants you know its because there is no hope of finding another way. It does not cure the problems or the issues. A friend in the halls of the transplant hospital once looked at me in the eyes on one of Ashley Kate's tougher days and said to me, "Trish, the slogan is Donate Life, thats not exactly true. It should be Donate Time because that is what transplant does for us. It gives us more time with our children." She was two years my veteran in the world of transplant at that time and I learned a great deal from her honesty. She was candid as she let me know I would be returning time and time again fighting for the life of my baby. She knew, she'd been there. Home a few months, hospitalized a few, home again, hospital again. Her sweet little girl has passed and I think of her and her wisdom in this world of hurt often.
Eval is hard. It is emotional. It is sometime brutally honest. Yes, its hard to go through. The first time we were so naive. So naive. It was obvious to us and everyone around that Ashley needed a transplant. We just had no idea the process of deciding if she would be given one until our encounter with the transplant surgeon on the very last day. It was a conversation Dave and I have never forgotten. Never. This eval, we were not naive. We knew we would be asked a series of questions by social workers, psychologists, financial counselors, etc. We also knew we would have a sit down talk with one of the surgeons. The key to all of these meetings is to be truthful, because it is one thing Dave and I are determined to always be, and to also get through it to the point that nothing we said to them would give them reason to deny our daughter. There were lots of questions asked us by social work about what we would change about the transplant experience, how was the family support, etc, etc. I very honestly looked her in the eyes and said, "You don't want to ask us those questions. You really don't want the answers to them. We are here because we believe this group of surgeons to be the best at bowel transplant in the country. It is why we trust them. If not for that, this would not be the hospital we choose to be in."
We trust UNMC with Ashley Kate. It doesn't mean we like or agree with every member on that staff. There are plenty of people who dislike or disagree with us. None of that matters. As we discussed with the surgeon yesterday, neither side is trying to win a popularity contest. We are stuck in an impossible situation. Both sides are being honest with each other and working toward a common goal. What is best for that little girl who is sitting in her chair in that room watching Mater tell McQueen that he "knowed he'd made a good choice". What irony to have that scene in her movie playing as we sat there. We too know that we have made the right choice as far as the team we take our daughter too.
The surgeon was very truthful with us. We were with him as well. That made it a difficult meeting. The truth is not always easy to hear. It hurts. It sucks. At one point I told him, "its not your daughter in that bed, but if it were you would do the exact same things that we do". He nodded his head, having two little girls and a little boy of his own, and said "Your right, buts its NOT one of my girls, its yours." The truth is painful. If they had ever experienced transplant on our side of the fence, as a parent, I believe the program would be different. If they could even imagine it on our side for a moment, I believe the program would be better. Its just the way it is. I am not a surgeon with whom parents place the lives of their most precious children in the care of, and they are not mothers and fathers of critically ill children for whom we would fight to the ends of this earth for. They will never understand my approach and I will never understand theirs. That is ok. It really is. We work together, through the hard times, to achieve a common goal. They see my daughter as a patient, as a number, as a statistic. I see her as SO MUCH MORE. No one wants Ashley Kate to die. They want us to decide if we want to enjoy her remaining days and not put her through this knowing she will die from the lack of nutrition when her access is gone, or do we want to risk a second transplant knowing she may very well die the day after it, or the next or the next. Not trying is a death sentence. Trying gives us a chance, but may very well result in her death. I wish I knew what would give her the most time, the best life, the longest childhood. I just don't have that luxury.
Please don't mistake our accounts of our experience. Truth be told if you read other transplant journals you would find difficult entries to read as well. The word of small bowel transplant is unlike any other transplant experience. As parents we live in a glass box when we are there. You can't have a bad day without an entire staff watching it take place. We endure the most stressful situations in our lives with an audience. I laughed out loud as the psychologist looked at me with a straight face and said, "Do you take time for yourself when your here? Perhaps a bubble bath, a nice book to relax". She has no CLUE what it is like for a mother in those halls of that hospital. We are lucky to get a shower every 2nd or 3rd day! Where would I find a bubble bath? At what point in Ash's transplant recovery would I take the time away from her to go and do that? Seriously. Very respectfully we asked her only one question, "Do you have any children?" To which she replied, "It depends on your definitions of children. I do have two very spoiled dogs." Ummm...not the same thing. No offense to dog lovers, I just ask that you don't compare your animal, your pet, to my daughter.
Do I think they will agree to list Ash? I do. I think they will. I just think they will try. I can't guarantee that, its a feeling I have. Will it be difficult? YES. Much more so than the first time because she has no remaining access. That is the truth and the truth is what was discussed in our meeting yesterday. Those are the reasons for such brutal questions being posed to us. We knew it would be hard and it was. They weren't trying to be cruel, they were being honest. We weren't being disrespectful, we were being honest.
Its a complicated dance to which very few people know the steps. There is no instructor to teach them to you, you learn as you go. We stumble a lot with the hope of leaving that dance floor sooner rather than later with our 5 year old in our arms. God willing that is what will happen for us the second time around. After all, you can pile up a room full of surgeons, psychologists, social workers, etc. etc. and if its not His will then none of this will take place. We know that. Without a doubt.