It has been 46 days since i have slept more than 3-4 broken hours. 46 days since poppy could breathe in a way that has adequately supplied oxygen to her brain and provided solid rest. 46 days since she did not thrash and roll and wrap herself in her sensors and oxygen tubes trying to sleep through the inflammation that is further narrowing her airway.
And there is not one medical professional who is listening and acting. Not one doctor who is recognizing that something is not right and this child needs relief. She needs to BREATHE. I am brushed off. Dealt with. Reassured. Sent home. Promised a call back (that, spoiler – doesn’t come).
Since the onset of illness on December 11 where she had the initial 7 days of fever accompanied by almost every other Kawasaki symptom – including elevated inflammation markers over the course of 5 blood draws – she has had a 13 day stretch of fever (which subsided Jan 3rd) recurring puffy, red eyes, swollen red palms, congestion not due to secretions – but inflammation, stomach aches, light sensitivity, uncharacteristic irritability, and mono. We have waited 46 days for an echocardiogram and have 6 more days to wait.
She has not been well in 46 days. Every single sleeping breath has been an audible, visible struggle. It is the only thing i see and hear.
I have been the squeaky wheel. I have called 20 different people trying to get just one to look at her complete history of just the past 46 days.
Her entire medical care structure has crumbled in the midst of this one illness and as i piece it back together i am left telling the same story over and over but i only have 5 minutes. That’s all any doctor has to spare. I drive 45 and wait 45 and get 5 minutes to speak.
I cannot put her at risk in an emergency room as long as her numbers are stable. But to keep her stable i have to keep upping the oxygen. Keep holding her mouth open. Keep staying awake every night to listen and watch and unwrap and reposition.
I want miraculous healing on day 47.
Blogging for my own record in case i lose my mind.