Sunday, February 23, 2014

February: The month we lost

The title of this post covers many things. Audrey was admitted on the first of February and discharged on the 22nd. Just 6 days shy of the entire month of February. This admission was so different from any other admission she's had. First she was really sick. While she has been really sick before, this was park the crash cart at her door in the ICU sick. Audrey had never been in the ICU before. She had never required vasopressors or rapid infusions of liters of fluid and blood products just to stabilize her. This was the sickest I have ever seen my baby and I have never been so scared for her. Seeing your chronically ill child this sick makes you confront some difficult facts. First, odds are this is not the last time I will see her go through this same scenario. The nature of her illness prevents her from being able to handle stress and infection like others might. Second, one day, this may become too much for her body to handle. This is the hard part of chronic disease. The hard part of a progressive disease like mitochondrial disease. Things are not likely to get better. This reality made this admission much more difficult for me than others.

Back to the title, Audrey lost major ground in her battle against dysautonomia. While at first we thought her vital sign instability was temporary due to her infection, we soon realized her body was actually unable to control itself enough to come off her vasopressor drips. The problem with dysautonomia is that there is very little to treat it and there is only one doctor in California who will see a pediatric patient with dysautonomia. You can imagine how popular he is and what his wait list looks like. The intensivists and all of Audrey's doctors brainstormed and tried multiple ideas and finally had to consult with outside specialists to figure out how to treat her dysautonomia. So she is on a few different medications which have helped control her vitals signs but she is still very dizzy and needs around the clock medication to control her nausea.

In the midst of her ICU drama, we find out Audrey has a new problem. She can now add adrenal insufficiency to her list of diagnosis. While its possible it has been going on for awhile, she was tested last year so its likely that it was the result of her infection. Thats what happens with mito. Every serious infection or stressor can lead to new symptoms and problems. So, for those that don't know, adrenal glands make cortisol which is an essential fight or flight hormone. Without this your body cannot respond appropriately to any stress whether its a hot day or an ear infection or a car accident, your body needs to be able to respond quickly and Audrey can't do this. Sounds familiar to dysautonomia right? It's been very difficult to tease out which symptoms belong to which diagnosis. Adrenal insufficiency in a child like Audrey is, of course, difficult to treat an manage because her body already doesn't handle stress in the best of circumstances. This will be an ongoing ordeal requiring patience from me and her medical team as we learn how to support her in this process.

So Audrey is home now. She's sicker than she's ever been. Her new baseline is way below where her sickest baseline was. I can only hope she will be able to get back some of the quality of life she had before becoming ill but no one knows if this is a realistic goal. For now we will continue this impossible home schedule with medications every 1-2 hours from 6am to midnight. With vital signs and urine dips and check ins with her doctors.  Everyone is so happy for us to be home but this is definitely the saddest I have ever felt coming home. I feel like we just lost a major battle and I don't know how we will rebuild and continue on. Her health status is so fragile I'm afraid to take my suitcase out of the car because one wrong move will have us speeding back to the emergency room. All I can hope for is some stability to slow this ever progressing, life-stealing disease.

No comments:

Post a Comment