I'm not sure how to even begin such a posting. Its weighed heavy on my heart since in the throws of the battle last week. Seriously we were "punched" in the gut by the mention of such a thing. It came out of no where. So unexpected. Nothing, and I repeat NOTHING that Ashley Kate has ever endured has brought those three letters into a conversation between her physicians and her daddy and myself. Just never heard them concerning our Ashley before last week.
So...I won't ask you to understand. I won't. I mean if your a parent then maybe I might ask you to imagine if you think you could what it might feel like to stand in the place that we do. It is such an impossible situation. So impossible.
Please look at the face of our Ashley. Look closely at those eyes, that smile, those rosy cheeks, and the glow of her skin(ignore the "fluorescent" bili glow and see the actual glow) and say to me "its time to think about putting a DNR in place". This picture was taken moments before I posted it tonight. This is our Ashley Kate tonight. This is how GOOD today was. She is a completely different child then the one we so desperately tried to comfort last week.
Dave and I realize we are living on borrowed time. We KNOW how fragile her life is, but more than that knowledge we KNOW how amazing her life is. We KNOW how good it can be and how precious she is to this family. We KNOW how very precious she is to her Creator. Not fighting for every single breath until HE CALLS her home is not an option for us. It has never been, is not now, and will never be. Her life has value and I see that value. I see it in every single breath that she takes. We will not be signing a DNR. We will not stand by and watch her die without trying everything humanly possible to save her. It will be the hand of God and only His hand that will remove her from our lives.
I refuse to stand before the God of the universe one day and not have the ability to answer Him when He asks me "What did you do with the gift that I gave to you?" I want to, with my whole heart, answer that "I did all I could do. I loved her well." I will not waste the precious life He entrusted to me. I will not give up. I will not give in. I am responsible to a Higher Power and I believe that with my whole heart.
We face an impossible choice. It is so impossible to know the right or wrong answer. I know that we are not willing to give up even ONE good day she could have here in her home to an uncertain path in our transplant hospital. I also know that by not attempting a transplant to enable her to have more of a life that we would never be able to forgive ourselves. We know both sides of the decision. We've lived them before. We know how hard transplant recovery is, but we also know how great life can be once she makes it back home. Its tricky trying to determine when her good days will be coming to an end before she is too sick, too broken, and too weak to endure the transplant. No one knows the right time. Well, I know that God knows and I'm having to trust that He will in some way make Himself known to us so that we will know it too without a doubt.
Today we spent in Shreveport. Ash had a doctors appointment there to go over all that she has been through since they had put eyes on her last. It was a LONG day. We actually had to make a visit to Interventional Radiology to work on one of the lumens of her central line(Praise God it was successful). We ran into my dear friend Joan and precious Kylie in the waiting room of the clinic. Such a sweet surprise. Such a blessing to hug her today. Kylie looks incredible. It is SOOOOOO deceiving to see our girls on their good days. You would never know they face an impossible battle ahead of them to regain their lives. Ashley did well on the drive. She did well with the many, many hours we spent there today. She went without her 4 hour nap and stayed awake for most of the day. At the end she succumbed to exhaustion and fell asleep sitting up. Needless to say she is sleeping hard at this moment and once her meds infuse I imagine I might get a 5 hour span of uninterrupted sleep. I don't think she's moved since I placed her in her bed.
We discussed hard things today. I think most of our discussions from this point on will consist of hard topics when we are at her appointments. She is in fact still battling staph in her line. We all expect her to battle it for some time. At this point it looks as though the antibiotics have it under control. She's not having fevers. She's recovering. The third spacing is improving although she is weighing in at 50lbs! I've had to go up an entire size in her clothing to accommodate the fluid she is carrying. The only sure treatment for clearing the staph is removal of the line. Removal of the line would sentence Ash to a miserable death. I can't even imagine such a horror. I won't.
Our current goal, as it always has been, is quality. We desire quality of life for Ashley Kate. I mean I desire a lot more than that for her, but at the top of the list remains quality. If I can't give her that then I have failed as her parent. I refuse to relent on this issue. She deserves nothing less.
We continue to be still. To wait. To seek. To not "jump" into a decision we can't take back. As we wait we aspire to live. To live a life full of joy and gratitude and to give our children the opportunities to make memories together. It means more to me than anything else at this time as we try and figure out our next move and when to make it.
For today I can say it was a good one. It was better than the one before, and the one before, and the one before that. She's still recovering, but she's much closer to her "normal" than she was last week and I am grateful. So very grateful. Thank you for your continued prayers. Its an up and down journey we are all taking together. Exhausting and emotional. I realize that. I also realize how much you have to endure as you continue loving our baby girl. I just wanted to thank you again. Sincerely, I thank you.