Ive been on the phone with transplant this morning making plans. Plans for the re evaluation process. There is a knot in the pit of my stomach every single time I have to talk with transplant. The feelings are so very hard to get anyone to understand. On one hand my heart is so full of appreciation and gratitude towards the team who time and time again works to give my daughter the opportunity to live. On the other hand transplant represents the hardest, loneliest, scariest, toughest days of her life and ours. My hesitation to dial or answer that 402 area code has nothing to do with the people, it has everything to do with the separation of our family. I know you don't understand. This is one of the areas where we are attacked most by readers. Its ok that people don't get what I'm trying to say. I don't want you to get it. If you do then it means you are probably living a similar life to ours.
So... the tentative plan(if schedules permit on the other end) is that Ashley and I will fly out early the week after Christmas. Probably Monday evening the 27th. Ash will be in interventional radiology for the vascular study sometime on Tuesday the 28th. We will continue the evaluation process on Wednesday and meet with the transplant surgeon on Thursday to talk about the findings and the teams decision regarding listing or not. Our hope was to be able to get everything done between Wednesday and Friday, allowing Dave to work the first of the week and still be present for the process. Unfortunately transplant is closed on Friday for the holiday. This is disappointing. Dave really has to be in our office on Monday and Tuesday, but he needs to be at the evaluation also. This is one of those times when I need the real world to take a break from spinning, pause, and then pick back up when Ashley's life has settled back down. As we all know real life keeps going no matter what the crisis is that pops up. Its that way for all of us. So we will be attempting to have him fly in Tuesday night or Wednesday morning instead. That's an extra flight that we were really hoping not to have.
Between now and then we hope to breathe deeply, laugh hard, and live fully. Its the best we can do. I have no idea what the future holds for our family. I have no idea if they will list. I have no idea if organs will ever become available. I have no idea when or for how long Ashley and I will be living in the hospital away from the family. I just have no idea. Its extremely important for Dave and I to be at every activity, every ball game, every everything of Blake and Allisons over the next 6 or 7 weeks because the one thing we do know is that this time together isn't going to last forever.
Until then...I plan to to take today to work on the outside holiday decorations. Hanging wreaths garlands, and lighting trees on the front walk. I don't think I can hang the lights on the roof tops, but I Ash and I can do the rest. I'm going to buckle her in her chair and let her drive around the yard while I get to work. Thats the plan. This is one plan that makes us smile.