Comfort and Quality
There are no words...it is simply put...surreal...when conversations concerning your almost 8 year old turn to quality of life and comfort care.
Don't mistake my first words...we do NOT think this infection is going to be the end. I suppose that it technically could end her life, but we don't expect it to.
We do however spend time discussing comfort care and quality of life issues with our physicians when trying to figure out how to get her through this infection, and the next, and the next. Its the nature of the beast when you have a child who is living on (for lack of better words) "borrowed time". It sucks. It sends my heart racing. My mind spinning. Everyone knows the overall prognosis is "grim" and "poor" to quote the latest written words scrawled on her medical update. As many times as I've read those words they never seem to go down any easier.
Today, our goal is to keep Ashley comfortable. We are focusing our decisions based on the ultimate wish for her to be most comfortable, less scared, but still safe. I've been on and off the phone all day dealing with the circumstances we find ourselves in with her status and trying to do my best to make the most informed decisions possible. Currently it has been decided, at least for the next 2 hours or so, to remain here at home pending lab results and to change up the course of antibiotic treatment in an attempt to spare her liver and kidneys more damage. All of this is a temporary plan with full knowledge that her labs may send us in a very different direction. We may or may not shoot chest x-rays this evening or early tomorrow morning. We may or may not begin IV lasix to pull some fluid off of her. We may or may not admit her to the hospital tonight or tomorrow. We may or may not be giving blood products by night fall. Its all being decided on a moment by moment basis, but since her respiratory status is stable she is able to remain here in our home until further decisions are made. The pros and cons of admitting her have been thoroughly discussed and for now there is nothing more that would be done if she were inpatient than what we are currently doing for her here at home. At this time I'm comfortable with that decision. We are all in agreement.
Still, to see her so sick is taking a toll on me emotionally. I think this is the point in which we have been "warned" was coming as far as the infections getting stronger and stronger and harder and harder to beat. That is a scary thought. Its a scary place to sit.
I've said it many times before and I'm going to say it again...how I wish real life would stop when this part of our life spins out of control. The balance of work, parenting, and responsibility that normally is just "life" gets so, so difficult when Ashley Kate becomes so fragile. All I want to do is concentrate on getting her better, and yet my heart and my mind are pulled in many, many directions with the children and trying to be there for each and every one of them when they need us.
I'd like to scream how horribly unfair this is and how she simply doesn't deserve any of it, but as I am often reminded by a few, there are thousands of precious children who suffer with illness and disease in this world and its not fair for any of them so why do I think Ashley Kate should be any different. My best answer is this...because she's mine and its my job to try and make it better for her. I can't lie about my desire for her to be whole and healthy. Not because she's special, but because God made her mine and a mother's heart desires for her child to live a long, full, pain free life. Its the best I've got. I grieve over the losses, the illnesses, and suffering of many...but its so close to home with Ash because she's in my home and in my care. So let me say it again...it sucks!
I'm just waiting for her to open her eyes, let out a giggle, and let me know all this worry and non sense has been about nothing. Come on, sweet girl, lets get to that point.