It's just steroids. No big deal. Benefit versus risk. It will get her off the vent, right? She'll come home sooner.
Wrong. Wrong, wrong, wrong, wrong. It's not just steroids. It's seven days worth of an adult dosage of Decadron. As in, one of the very same medications administered to my mother as a last resort after they discovered that the cancer had metastasized to her brain. The key words in that sentence are 'last resort'. The therapy of Decadron in preemies is nothing new, it's been happening since the 70's. But the initial intention of this drug was to be given when all else fails. When the benefit outweighs the risk. That risk is worst case scenario. Infection, because it will suppress her immune system a lot more than it already is. There's also kidney failure, growth restriction, diabetes, retinopathy, nervous system disorders, and severe mental retardation. The purpose of this medication is to shrink the swelling in Little Bird's lungs, making it possible for her to be successfully extubated. But at what cost? She'll breath unassisted sooner, but she'll be blind. She'll come home faster, but she won't be able to spell the word 'home' until she's fifteen. Aside from shrinking her lung tissue, it will most certainly also cause her brain tissue to deteriorate. It's been directly linked to every condition listed above. And that's something that they tried to avoid telling us.
They want her off the ventilator. I want her off the ventilator. No one in this world wants her off of that machine more than she does. Five days ago, she managed to extubate herself. While on her belly, she lifted her head in an attempt to turn it to the other side. She's known to do this, but can't and shouldn't because the tube catches in her pillow. This time, she flipped her head over completely and pulled the tube out, requiring an emergency intubation.
When we declined the steroid intervention, we were specifically told they'd make a note of it in her chart. Yesterday afternoon, we discovered that one of her doctors jumped the gun, and gave her the initial dose. After learning this, and completely and verbally losing my mind, that same doctor tried to smooth the situation over by attempting to dumb me down. She essentially blamed Google for all the hype against it, as if I were ignorant enough to only read one link. Oh, I've read the links. I've read nine days and one hundred and seventeen pages of them, both bad and good. And my conscience continues to scream don't do it! Will one dose hurt her? Will it show up later on down the road? I don't know. I can't undo what's already been done. All I can do is make sure that they've discontinued the treatment, and that she will not receive so much as a band aid without our written consent. Why are we not on the phone right now, requesting a transfer? Little Bird simply isn't stable enough to withstand it. Besides, what good will that do? Tell me, where is the perfect hospital? I've yet to find one that exists that can boast a success rate of a hundred and fifty percent. Human error exists everywhere. People fail people. I've failed her.
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