Things are going fine, except . . . a few weeks ago some angry patient on the pediatric psych floor above us purposefully set off the sprinkler system causing a flood and rendering a major portion of the oncology floor unusable. Oh yes. Because, come on now, this just isn’t designed to ever be easy. So all the patients are packed into the smaller two of the three “pods” on our floor: no playroom with train table and art supplies, no activity area with computer or Wii system, no common space near the windows for reading a book in the sunlight.  The poor nurses have no break room, nowhere to eat their meals or have a moment of quiet. And Austin has no circular path on which to run his daily laps.

Sooooo, everyone is feeling a little stir crazy, especially when the sun is shining brightly outside the windows and we’re stuck in our cramped quarters with medical supplies in towering stacks along the hallway walls and nursing students milling about not knowing what to do with themselves.  We do have a nice big room though, with plenty of room for car racing and fort building.

Which is what we’ve done in Austin’s moments of playfulness, in between his moments of sheer frustration at being tied down yet again (this visit did seem to come up quickly, didn’t it?).  Yesterday, he seemed to have accepted the schedule of brief unhooking from the IV pole and, while he eagerly awaited it, he didn’t rage against it.  Today . . . not so much.

He’s been very angry again, fighting and trying to unscrew the IV tube from his PICC line on his own. He even bit into his line. Not all the way through, but enough to cause a leak that surprised him greatly. He immediately felt awful and cried and cried, fearful (I think) about what would happen next, but it was only his fluids (thank god not his chemo!), so his nurse hooked up a new tube and he quickly melted into a much needed nap.

He awoke to his aunt and grandma who came to relieve me for a few hours.   I was so anxious for them to arrive so I could get myself out of there and into the (still cold but oh-so-welcome) sunshine, which just underscores what Austin must be feeling. He doesn’t get a three-hour break to go outside and run freely (which is what I did); he doesn’t get to recharge with a home-cooked dinner in his own home. Of course he’s mad. Who wouldn’t be?

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