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Didn’t expect to hear from me so quickly, huh?

Have I ever told you that Austin is a snorer? Like a hear-him-from downstairs-snorer? He’s loud, all night long, snargling and snuffling and waking anyone around him. This is relevant because sedation can be dangerous for those at risk of respiratory failure. We’ve run into this problem before over the years, but he usually needs to be sedated for only a short period of time. For radiation or CTs with contrast, it’s a half hour maximum that he’s actually sedated and only a few minutes in the machine and out of the range of the doctor’s watchful eyes. MRIs can take up to two hours.

We went to sedation today around 12:30, after steering Austin away from food all morning. We had packed a good “lunch” for him to eat around 4pm when he would finally wake up. The nurse went through her procedures and then the doctor arrived. He looked in Austin’s mouth and quickly left the room, returning a minute later with a tongue depressor. He called me over to show me Austin’s huge and swollen tonsils, explaining how this is a problem, and all along I’m thinking he’s just pointing them out, advising me kindly to see an ENT, sharing tangential information. But no. Then he drops the bomb. “We can’t sedate him; it’s too dangerous.”

He has to go through anesthesia instead, which doesn’t hold these same respiratory risks (although is a bigger deal in other ways that I can’t quite explain). Of course, anesthesia couldn’t fit us in today and the MRI has now been rescheduled for next Wednesday. In the afternoon. On a day when his class is going on an end-of-the-year field trip to Beachwood playground that will inevitably include many delicious snacks.  Uuuuuuugggggghhhhhhhhh. I will bring him anyway that day, convince the class to hold off as long as possible on putting out the food, offer more popsicles and leave early.

I guess we weren’t quite specific enough with our wishes. Next time, we have to include the date.

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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February 2020
M T W T F S S
« Jan    
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3456789
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