A Positive Test
Ashley Kate saw one of her physicians this morning. Same symptoms as described in the previous days except for a higher temperature and higher heart rate.
She was examined and tested for this and that. A positive was returned on one of the tests.
As Ashely Kate's parents we have MANY, MANY issues to balance in her care. There is so much more going on in her body than "just" transplant. Her medical history is extensive and complex and stretches into areas that most parents of transplant patients never even dream of entering.
From the outside my sweet girl is nothing short of beautiful and amazing. Many times people who pass us by have no idea until looking closely that there are issues. Trust me when I say that I am grateful. Extremely grateful that we can at times pass by without any disability being noticed. I see those brief encounters in our every day life as a gift. It does get exhausting trying to explain all the extras and other issues to inquisitive strangers. Funny thing is that its usually a child who notices long before the adult they are with that something is different about Ash. Kids are amazing like that.
Anyway, in this particular instance treatment for the positive test is not an option because Dave and I are responsible for caring for Ashley Kate as a whole and not in parts. One of the jobs we have as her parents is to know, educate, and investigate side effects of treatments and medications for the many things that come along in Ash's life. At the top of our list is protection of Ashley's injured brain. If at anytime "common" treatment runs a risk of further brain injury or potential complication to her precious mind then we must go around it and work to support her through the illness as opposed to treating it. We find ourselves in this place today. In the end our conclusion is this..."immuno suppression sucks!" Yup, that pretty much sums it up.
Currently Ash is not in danger. She is stable, but she is sick. With a bug. One that we choose not to treat like other patients are usually treated. Instead we will watch her closely, communicate well with her physician, and evaluate her daily if her condition worsens. Its just the way it is. At the end of the day we choose to not risk further brain injury, but to fiercely protect the mind she has been given instead.
We are also dropping off blood cultures from both of her central line lumens just in case they are infected. We assume they are not, but with a temperature of 102 this morning its necessary.
We are hopeful that in a few days her symptoms will improve and her smiley, happy self will have the opportunity to return to us.
She has another appointment Thursday morning in Shreveport with her team of physicians over there. Hoping things go the way we all want and she remains stable and home bound. Currently she is cuddle up on her pillow watching Bambi for the 5th time today.
Thank you so much for your prayers this week. I continue to be humbled by your comments, care, and concern for our precious girl and our family. After all these years to know that you are still coming to her story day after day amazes me. Thank you from the deepest part of my heart.