Only the Father knows how very much I love the snow, and only He could really see what a crummy place my heart has been in lately. So what does He do? I wake this morning to a BEAUTIFUL showering of large, fluffy, snowflakes outside our windows. What can make the PICU a lovely place? Being on the 5th floor and having the opportunity to watch the snow float all the way down to the ground. I am smiling. Sure, I can hear it know, "What makes you think the snow is for you?" Well, I just think that He cares that much about me and He knew what could make my heart smile. I'm sure it is serving other purposes as well, but for me it is bringing me happiness. Ashley Kate? she could care less and wishes I would have allowed her to sleep late rather than waking her up with my original, "Its Snowing" song. I can't wait for Dave to get here so we can watch it together. Snow just makes Christmas songs sound even better, don't you think?
Well, I think its funny how things change. It was only a few months ago that I began counting the days until we could start decorating for the holidays. Ash and I were sitting on the floor at home and we were talking about Thanksgiving and Christmas and I was telling her how wonderful it was going to be to have her home this year. She sat and played and pretended to care about all I was sharing. I was just so grateful that day as I anticipated how wonderful the fall and winter holidays were going to be this year. My goal was to make it more magical than ever for the kids since it would be our first one with all five of us together. Today my goal is different. My goal is air. Oxygen for Ash. That is what I am now concentrating on. She has made huge progress this week. From 10 liters down to only one fourth of a liter. She just has little ways to go. They are wanting to move us up a floor, some of us are wanting to move out. As always Ash will be safer away from the larger population of patients who have those yucky viruses. A decision will be made later today.
Many, many changes are being made. One of the biggest is a switch from her current immunosuppresion to a newer one that will be less toxic to her kidneys. It all seems like a trade off to me. The more I read about the new drug the more concerned I become. We are switching one set of trouble and issues for another. What do you do? Currently Ash's kidneys are struggling causing her to need more fluid which in turn causes her to become "overloaded"( only enhanced by another medication she is on) causing her to need oxygen support. The top priority for now is keep her immunosuppression at a safe level while we ease up on the stress it is placing on her kidneys. It is a difficult place to be in. The side effects of this new medication are ugly! but they really want to give those kidneys a break so we will for a while. Yesterday our surgeon told me, "She is in a tough spot. She has a history of PTLD( the lymphoma in her lungs) and of rejection. Thats is a fine line she is walking between the two." If you go down on her immunosuppression then her organs are at risk. If you go up on it then she is at risk for more tumors and lymphoma. It all makes me want to scream, and then I just become "ok" with it.
Living in fear is not an option. Parenting and making decisions for Ash based on fear is not an option. We have to just keep trusting and keep moving forward. So today I am enjoying the snowy goodness outside our windows. I am enjoying the happiness that spills over the phone lines from Blake and Allie's hearts. I am enjoying the knowledge that in about 13 hours Dave will arrive. I am enjoying this rosy cheeked baby and all of her attitude. I am enjoying the goodness of the Lord and the knowledge that He loves me enough to want to see me smile. Wish I could ship some of my "snowy goodness" back home to Texas for all my friends to see. Thanks so much for thinking of us during your holiday. Play a round or two of Sequence for me( I just LOVE that game), and know that you are loved all the way from snowy Omaha, Nebraska. Take care. Trish