Where we sit
I guess technically we sit in the PICU of Sutton Childrens in Shreveport, LA. We are waiting for the platelets to arrive. They've dropped to 13. The plan is to start infusing about midnight. Then we will give her some albumin and then some lasix. We are switching her antibiotic from Rocephin once every 24 hours to Fortaz every 8 hours. The bug shows its susceptible to both drugs, but we aren't getting great turn around results with the Rocephin after 4 days of treatment. No big plans on doing anything heroic. Just basic tank ups on the things her body is short of right now. I think we will be here a couple of days. Maybe get home Wednesday morning? Maybe?
The bigger picture suggests we need to clear this infection and get her listed ASAP, but when it comes right down to it...I'm having a really hard time with that. Its just so hard to give up Ashley Kate's quality of life right now. I know so many of you don't understand, and to be honest I don't always understand. Its just that I'm struggling with the knowledge I have of bowel transplant survival and recovery and all it entails. The odds are stacked against us in both scenarios. Either way we choose. Its going to be rough.
As a mom I'm haunted with the inability to spare her pain. I'm haunted with the idea of leaving behind two amazing young people with no one to take care of. I'm haunted by the absolute despair that surrounds a parent in a PICU situation when you are alone and frightened and exhausted. I'm haunted with images of my Ashley lying so still and so distant from me when intubated and fighting for her life. I'm haunted with memories of how hard it is to hold a marriage and a family together when separated by hundreds of miles for months and months on end under the most stressful of situations. Most of all I'm haunted by the thought of never bringing my Ashley back to her home. The truth is that I don't know if she will survive and the thought of that makes me shake inside.
If I could choose I would have chosen for this to never have happened to Ash. If I would have been given a choice...but I wasn't given a choice. The only choice I've ever been given was if I wanted to love her or not and that goes without saying.
So where do I sit when it comes to transplant? I sit in a very uncomfortable seat. There are no clear answers and no easy choices. If only you could see inside of our home every day and feel the joy and the peace that surrounds us when Ash is there. If you could have witnessed my big kids tending to her needs two days ago before I could make it down the hall to her. Blake on one side holding a towel for her as she vomited into it and Allie on the other side emptying out her bags to make room for it all to drain out instead of up. If you could have seen the absolute love and tenderness they showed her in those moments then you too would be having a very tough time taking her from them without the assurance of ever bringing her back to them. They LOVE her so well. If you could peek into our home in the evening hours right as Dave comes into the room and see the light in her eyes shine so bright at the sight of her dad. If you knew how good it feels to climb into my bed each night knowing that all three of those amazing children are safely resting under our roof. I love home more than any other place on this earth. I love it so very much not because its grand, or perfectly decorated, or shiny clean. No, I love it because its the one place that I feel complete and utter contentment in this world. No judgement, only forgiveness. No harsh words or condemnation, only encouragement and support. More laughter than tears. More good times than bad. More of everyone and everything that I love. We are at our very best when we are surrounded by each other. I love those people in my home more than anything this world could ever offer me. Keeping us a family is my priority. Its my job. Its what I do.
Transplant is in our future. Pain. Struggle. Fear. Separation. Financial hardships. They are all a part of what our future holds. I'm just not at the place that I'm ready to embrace it all again. Not yet. Please, not yet.
We were supposed to be at the beach this weekend. Just a quick trip to allow our sweet Ashley to feel the waves roll in over the tops of her tiny feet. A few more days of banking memories with our kids together. Its the one thing I had on my list to accomplish when bringing Ash home this past year that I had yet to do. Tomorrow I had planned to begin decorating our home for Christmas. Another distraction that I very much need and an assurance to me that it would be in place for Dave and the children even if Ash and I are called away. Something that I need to have done before I leave. This infection, this admission was not what we had in mind for Ash. She's been so strong and so happy and so good. Bouncing back time after time. Proving to the world that God is not finished with her yet. Instead I'm sitting here in the PICU being asked once again about DNR's and the like and to what extent we want to go if things take a turn for the worse. Not that its expected, but its becoming painfully obvious that we are at the place that the conversation has become necessary to all who care for our Ashley.
Your prayers for Ash are always appreciated. After 6 years of ups and downs I am so humbled by those of you who still care. Who still pray. Who still encourage. I guess selfishly I would ask that your prayers for my heart over the coming weeks would be added. I don't know how I'll ever say, "Its time, lets list again." I just don't know how to take from her all that she has and all that she knows. I don't know how I'll ever be ready.
The other night I shared with Dave that I LOVED Ashley Kate at 1 years old(when we first had her transplanted), but at 6 years old I more than LOVE my daughter and know that I can't do this world without her in it. It just seems so cruel. So unfair.
So thats where we sit tonight.