Ready to Run
Ash and I are what you might call flexible. Not because we were born this way, but because He is making us this way. It has not been easy, but after 2 years of it we are starting to get pretty good at it.
There is a winter storm headed into Omaha tonight. Bringing with it snow and ice. Not good for a road trip. Especially for a Texan who has never driven on it before. So what now? Leaving around midnight isn't going to work. We need to outrun the storm. So...Ash and I are ready. We are loaded and ready to go. Dave has changed his flight from Omaha to Kansas City and I just have to find him. I've never been to Kansas City and I have no idea where the airport is, but Ash and I are going to give it a try so that we won't have to drive in snow and ice tonight. We plan on leaving Omaha around 4p.m. and arriving at the airport sometime between 7and 8pm. Dave will land at 8:40 and the three of us will travel through the night until we arrive home tomorrow.
Ashley's stool output continues to climb. Our goal pre-rejection was no more than 400cc in 24 hours. Post rejection our goal has been around 600cc in 24 hours working itself back to that 400cc mark giving her around 30-40cc/per kilo of output a day. 48 hours ago her output climbed to 1070cc. Yesterday she has 1250cc. Today she has already been stooling at a rate of 300 every 4 hours. Why is this happening? Two guesses. Viral infection or Rejection. With all of our immunosuppression changes over the last week and half she has gone from too much coverage to almost none and we are still adjusting the levels trying to find a good balance. What are my options? We can sit in our hotel room and replace fluids or we can sit at home for the next few days and replace fluids. We have decided to make the trip knowing that with ANY changes in her respiratory status we will jump on a flight and return. Please, please pray that she will remain stable. She looks great! She is happy and playful. Her labs look better than they have in weeks. Her numbers are handling the loss of fluid and its replacement very, very well. Also would you please pray that she might not be back in rejection. As always it is something that hangs out in the back of all of our minds. Especially with high stool output. I have talked to our transplant team several times today and they want to do nothing but watch her for the next few days, so we will overnight her lab work each day and watch.
Nobody ever promised us that transplant life would be easy. In fact we found out early on that it is anything but that for some. We just happen to be counted among that "some". We are still blessed. Daily I look into her sweet face and thank God for her life. She is the sweetest little girl and I am so grateful she is with us. So we step out in faith today. Trusting that this privilege has been a gift from the Father to our family and hoping to make some precious memories with the precious lives we get to parent. God has been good to us. Talk to you guys soon. Love, Trish