Ashley Kate and I are spending the evening back in the hospital getting her a much needed blood transfusion. No one has any idea why her body is using up but failing to produce the amount of blood that it needs. Just another unexplained event in the life of transplant.
Our physician flew out of the country this morning but before he left he had consulted with infectious disease. Actually last week he consulted with them, and so in his absence they will be rounding on us this evening. They have ordered a huge panel of labs looking for answers. At this point in the "game" we aren't really concerned with new diagnosis. We accept where we are, treat the very best possible way, and then go home to live her little life. I'm hopeful its that easy for us tonight, but you just never really know when new eyes are looking her over. Ash is complicated medically. About as complicated as a pediatric patient Longview has ever seen and so its a challenge to find different disciplines willing to tackle her. We are thoroughly pleased with the teams we have involved in her care. We are all on the same page. We all have the most important goal in mind...quality of life. There are no cures, no easy paths, no clear answers anymore. We just live life and take the challenges as they come. Its really ok to be in this place. Funny to "hear" myself say those words, but its simply ok. Life is easier when we aren't trying to fix her or her figure it all out. Just watching her grow, seeing her smile, and celebrating each day is enough for us now. Ashley Kate will never be healthy. She will not be healed. I have finally accepted that she is a chronic patient and will always have difficult medical obstacles to overcome. How I wish it were different, but it is not.
What is important to me is that she is living a happy, joy filled, blessed, life. If I can do anything to make it easier, better, or more enjoyable for her then that is what I strive to do. I love her like crazy. Simply adore this child and all she is.
Yes, she has a very dangerous, very stubborn bacteria living inside of her central line with the potential to make her very ill. Still she has no idea its there and doesn't act bothered by it in the least. I can sit and stress and worry and make myself physically ill, but it doesn't change a thing. The best I can do for her is stay on top of it, get her the treatment she needs, and wait for it to clear. So...thats what I'm doing.
We aren't sure if the blood issues are related or caused by this infection or if they are simply occurring at the same time. I would like to think they will resolve with the infection and not become her new norm. If she continues to require blood transfusions at this rate we may have to begin a series of iron infusions to assist her bone marrow in making its own blood supply. Its been thrown out there, but for now is not the plan. I sure hope it won't be necessary.
I just wanted to update everyone on our where abouts this evening. Its just us girls hanging out in our room at the hospital. Hoping to fill her up and discharge back home to our beds later tonight. Have a great evening.