Balancing, Weighing, Deciding?

I find myself in a constant struggle trying to balance, weigh, and decide all of Ashley's behaviors, signs, and symptoms. Is it? is it not? Cancer related? Transplant related? Nuero related? I never really know and I struggle trying to figure it all out. The truth is that no one really knows what is related to what when it comes to my sweet Ashley Kate. She is complex. I remember going into the local ER one night and her nurse seeing her undressed for the first time took a step back and said,"What is that?" "Oh no," I thought to myself. "We are in trouble if trained nursing staff are afraid of her." When Ash is dressed many people have no idea she has had to fight so very hard to live. Obviously she doesn't look like shes almost 2, but you might not know she is supposed to so that never seems to alarm anyone. Its underneath her clothing that the evidence to her struggle hides. I can't tell you how many occasions there have been when I have had to reassure our nursing staffs(not ours in NE, they of course are very used to seeing all the related bells and whistles of transplant) that all is O.k. and if they will just do "such and such" we will be fine. I can't fault them. As I said before she is complex. It is intimidating to see something so little covered in so many scars with so many things(like intestine, central lines, mickey buttons, ostomy bags, etc.) coming out of her and hanging off of her. Dave doesn't even know how to do everything that has to be done to care for her(but he is learning).

My biggest weekly dilemma is her fluid balance. Is she or is she not dehydrated? Dehydration is such a dangerous thing especially in a transplant patient. Ash has spent at least a 24 hour period each and every week since returning home from Nebraska vomiting. She continues to try and play, she even laughs, but she vomits. I usually turn off her feeds and hook up Pedialyte to try and keep her hydrated and give her some electrolytes, but the nagging fear of severe dehydration haunts me the entire time. I do not rest. I do not sleep. I spend the time trying to figure out is this normal chemo related behavior or is she getting sick with some type of virus? I never know and anyone I call to ask never knows either. Why is she vomiting? Oncology tells me its not her chemo, but it started the week we began treatment and has continued each and every week since. She never gets sick until day 4 or 5 post treatment and they tell me this is not related to the cancer treatment. Then why is it so regular and why did it begin the very same time we started giving her cancer drugs? It doesn't make sense to me. If it is a bug or a virus then it should be showing up in a lab or growing out in a culture, but its not. I can't figure it out. All I know is that this morning I have sent more blood to the lab trying to avoid a hospital stay. I am now waiting on results to see if we need to have IV fluids running or not. I sit. I wait. I balance. I weigh. I pray because I don't know what to decide to do.

Then you have to throw in whatever nuerological stuff is going on. Ash has definitely sufferred from some type of nuero damage. When it happened we are not exactly sure. What happened no one knows. What it is no one has been able to figure out because she has much more pressing issues to deal with. The confusing part is this: Does she shake and tremor because she is dehydrated? Does she shake and tremor because of the high level of powerful drugs she takes on a daily basis? Does she shake and tremor because of the nuero damage? No one knows. As I shared she is very, very complex.

This morning the only thing I know for sure when it comes to my sweet Ashley Kate is that I may not have it all figured out and I may not have all the answers I need, but HE does. He knows exactly what is happeninig and why. All I can do is depend on Him and pray He guides me to make the right decisions for her. I could and she could really use your prayers today as we try and figure out what is going on in her little body. Right now she is sleeping for the first time in almost 48 hours and I am running more blood to the hospital for another lab. Thanks so much for checking in on her. She continues to teach me to be content in whatever situation I find myself in. No matter how bad she feels she ALWAYS manages to smile. She NEVER fails to show me that its all going to be o.k. I think she trusts me way more than I trust myself. I pray my faith and trust in Him are as a strong as hers is in me. Take care today. Trish