And then freed
The past day and a half have been a little better. Austin learned (through some trial and error) that flying into a rage wouldn’t prevent him from being re-hooked to his pole, so he makes the most of his few minutes of freedom and then begrudgingly allows his nurse to screw that IV tube back to his PICC line. I tried to take a picture of him running laps last night but he was too fast for my phone’s camera, just a streak of baldness dashing by.
And the very good news, confirmed just moments ago, is that he is allowed to go home tonight after his post-chemo hydration. Which happens to fall at some crazy time like 12:30 in the morning. But a late sleep at home beats sleep at the hospital any day.
Just goes to show the enormous benefit of advocating on behalf of your child. We push them a lot, I know, always proposing new schedules or ways of doing things. None of our requests are in any way harmful to Austin or his health, but they do sometimes go against hospital norms. Things there get done a certain way simply because that’s the way they’ve always been done: routines and policies and structures. But if you have an idea or want to tweak to the system, and have good logic to back it up, the doctors and nurses will indeed listen.
Proof positive: Austin was shackled and soon he will be freed.
Yeah!! Been thinking of you all weekend and today.
Always question authority!
Wonderful news! So how full is the one marble jar, and how empty is the other? Seems like you must be about half way done with the chemo?
Barbara
Krissy-
I apologize-my family’s illnesses keep coinciding with your hospitalizations. Maybe we are feeling empathy for Austin. I am glad to hear you are home again. Stay healthy! Hope to see you soon!
Ann
Glad to hear that Rainbow is still flexible and listening to parents. They were pioneers in family centered care, the only way to care for kids. I was lucky to arrive just as it became the mantra.
Your writing is so visual. I can see Austin on the unit, and remember why I loved my 20 years there. Kids don’t know how to be sick or in pain. They teach us so much about life and what is really important.
Wishing you “forward progress,” one day at a time.