If you were given the opportunity to be smothered by something, anything in this world what would you want it to be? Money? Admiration? Chocolate?
Tonight I found my answer. Pickle Juice!
I sat in the family room and watched our youngest daughter smother her daddy's face in kisses. They were both so tickled at her actions. He was lying on the floor in front of her and he would say, "Ohhh, love daddy" and she would literally fall forward onto his face and smother him with all the love she could muster up. It was the cutest thing in the world. Sure his face was getting sticky, and sure he could barely breathe, but the smile on both of their faces was so amazing! If I know anything with absolute certainty in my life it is this; Ashley Kate LOVES her daddy!
Our appointments in Shreveport brought no clarity or answers. Just another set of appointments that are needing to be scheduled. I don't think the swelling is going to go away. From what I have learned her thrombosis is pretty much here to stay. It will probably continue to have better days than others and in time may improve a little, but ultimately the vascular surgeon said he can't tell me that her face and neck will ever be "normal" looking again. He would like to have another veino gram done to compare to the one that was done a few weeks ago. He would also like to have her central line removed as soon as possible. The only problem with that is the need to draw multiple labs a week. He saw that as ridiculous and wants everyone to agree to monthly lab checks for all of her levels across the board. His suggestion was to figure out a proper FK dose and proper coumidin dose and then pull out that line(easier said than done). Then he would like us to drive there once a month, have Ashley lightly sedated, and allow a femoral stick to draw the necessary blood work while she is sleeping. She would never know it had taken place and everyone could have as much blood as they would like without putting her at risk for more clots with this current central line and without taxing her little veins that are so difficult to access. This was his idea. Now getting everyone to agree with it may be a whole different story. I sat and listened and am now trying to process all that he had to say. Perhaps this would work? but to be honest I just don't know if it will. This whole vein/lad work/ blood clot/ swelling issue is a nightmare. There really are no easy answers. So nothing was really accomplished today. Ashley remains swollen indefinitely and my skin has too thicken up so that the comments that are whispered each time we go somewhere won't bother this mommy's heart.
Tonight I want to thank you for your prayers and for your continued time spent here. There are so many of you who continue to leave encouragement for us daily and it blesses my heart so very much to hear from you. Thank you for praying for us, for our transplant friends, for baby Lauren, and for the others we mention from time to time. God continues to hear our prayers and work in our lives daily. I'm just so thankful He brought each of you here. If you would pray for our little friend Kylie tonight and for her momma I would greatly appreciate it. Transplant life is hard, and bowel transplants have certainly earned a position as one of the most difficult transplant roads to walk. Each and every day can hold its own set of problems. Kylie's little tummy is hurting and so is her mommy's heart. Please pray for our precious friends tonight and know that you are being smothered in my gratitude for loving us and loving Him enough to love others. Good night my friends. Trish