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What’s that they say about the best laid plans? I sure wish they wouldn’t say it.

As you astute readers may have already guessed, I learned this morning that tomorrow’s long-awaited scans need to be rescheduled. And I’m not using that word “long-awaited’ lightly. We’ve been waiting for these since July 30, 2007.

The radiologist who does all of Austin’s ultrasounds is unexpectedly out of the hospital until Monday. Usually, some other doctor could take over that function but Austin’s kidney is so misshapen and, well, abnormal that we really need the one guy who’s familiar with it to do this all-important scan. Otherwise, we’d end up with a messy reading and wishy-washy results and then they’d probably want to do it again in a few weeks.

I’ve known for a few hours now and have stopped muttering swear words under my breath and am instead trying to view this in the grand scheme of things. Yet another slight detour on the endlessly curving road to wellness. Of course, it does not ultimately matter whether Austin has his two-year scans tomorrow or on Monday (which is when they’re now happening). But goddammit! I was ready. I was excited. We had the evening cleared (a rarity) so we could relax and enjoy a nice celebratory dinner as a family without one or the other of us needing to rush off to a meeting or practice or whatever we’ll have to rush off to on Monday.  The day was set: Braedan was invited to a friend’s house, I’d given away Austin’s slot at lunch bunch so we could head straight to the hospital after his morning at school.  And now? Maybe we’ll just all play hooky and go to the zoo or something.

And set our sights on May 7.

Today is not PICC-removing day after all.  There was some confusion about whether or not Austin actually needed blood and it’s now all been moved to tomorrow. His hemoglobin is not low enough to require a transfusion right now but it’s steadily declining so his oncologist said we could either keep the PICC in and give him blood next week or give him blood through a peripheral IV next week or give him blood preemptively tomorrow while the line is still in. If only all our decisions could be so easy!

Good thing Austin’s sense of time is a little fuzzy. I told him it was moved to tomorrow and he said, “The one day after this day?” just to make sure. Yes, honey, the one day after this day. The PICC hasn’t been all that bad, nothing like I expected when I walked into the pre-op room back in January, hoping for a repaired Mediport, only to see Austin with a bandaged arm. And my heart just sank and I thought, “Oh come on now, not a tube dangling right out of his arm! That’s gonna get stuck on things and get dirty and probably get ripped out by him or his brother!” It seemed like such a big deal in that moment (I just reread that particular post and everything seemed like a big deal right then) but we’ve all been pleasantly surprised by it. It doesn’t itch him like the Broviac used to and aside from that crack in the tubing back in March that required an extra surgery and a few scary failed-flushing attempts, it’s always worked the way it’s supposed to.

But it will be nice to not have to flush it three times each day, including late at night when I have to finagle the line out of his pajama sleeve of the arm he’s inevitably asleep on. And he is most thrilled to take a bath without keeping his left arm propped on the edge of the tub, all wrapped up in Press n Seal and tape.  I think he’s almost as excited for that as he is to go swimming.

And now, just the one day after this day.

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February 2020
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