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, routines, routines. 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.

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