Thursday, April 2, 2015

Two Hundred and Forty Steps....

We came into Philly for our recheck from Babygirl's hospital stay three weeks ago. To recap:  She was admitted because her creatinine bumped up to 1.7 (normal for a kid is 0.6, normal for Babygirl is 0.8 or 0.9).  Increases represent exponential losses in function, so doubling isn't losing HALF your kidney function, it's more like losing 75%.  Or more.  With hydration, it came back down to 1.1 and they let us go.  A week later locally it was 1.07, a marginal improvement. 

We arrived before 8 AM, as usual, got our paperwork and hiked up the 48 steps in the atrium to the lab, came back down and had breakfast.  Our follow up was with the doctor who took care of Babygirl in the hospital, which was nice.  He discussed her ongoing production of antibodies against the donor kidney.  The antibody levels aren't increasing, which is good.  But they aren't going to go away on her current medications either, which is not good.  Her creatinine is increasing, now at 1.3 despite a week of very good hydration.  He went over treatment options:  Do nothing (which is common, and rather standard-of-care in many places), give intermittent IVIG (IV antibodies to tag HER antibodies and take them out of business so they can't hit the kidney.  She'll keep making more, so they have to do this every month for.....ever?), or do intermittent plasmapheresis (basically superficially similar to dialysis in that it removes her antibodies from her blood and puts the blood back in - the Red Cross does this to obtain platelets).  They can't make any therapeutic decisions without knowing if it is the antibodies that are damaging the kidney.  One of her anti-rejection medications could be the problem, so while we are waiting for those results, let's go visit the sedation team and see if they can fit Babygirl in tomorrow for a biopsy if we need one.

That's on the third floor.  Up the 48 steps we go.  I already know that they are going to say no.  The last biopsy required extra medication because Babygirl is so incredibly ticklish (who knew this would be a medical issue?), and with the weight she's gained due to medications, sedation is no longer a safe option.  No surprise to me, they say no.  If it wasn't safe nearly two years ago for her spinal tap, why would it be safe now?

The medication levels are fine, so adjusting them will not help us.  Biopsy is on, and we need to go to see the anesthesia team ("Even though we were just there three weeks ago?" I ask.  Apparently so.)  Up the 48 steps.  The receptionist checks:  We are not on her list, but everyone is at lunch.  WE haven't had lunch, so we give her our phone number, and go back to the main building (you guessed it, down the steps) for lunch.

We climb back up the 48 steps and check back in, and the receptionist informs us that Nephrology never called them, and if they don't call, we won't BE on the schedule, and she can't get us registered. 

I can honestly say that at this point I should likely have been a little pissed.  But it's seriously already not the worst thing that's happened to me today, not by a long, long shot, and it simply made me laugh.  Babygirl and I both laughed out loud, spun around and headed for....the 48 steps. 

Nephrology called.  We hiked back up. Again.  The receptionist says we are still not on the list, but to wait a few more minutes because these things take time, you know?  We have a pretty good grip on THAT concept, truly we do.  Ten minutes later my phone rang, and it was the anesthesia NP asking to speak to me.  No problem, I told her, I'm in your waiting room. She was a little surprised.  It seems that Babygirl really had no need to be seen in person since she'd just been there three weeks ago and she just needed to update things, but since we WERE there.....

Oh.  My.  Goodness.  I didn't tell Babygirl that we needn't have waited, it would have been just too frustrating.  The NP was kind and efficient, and tomorrow the biopsy will happen, but we don't know what time.  The hospital will call us, in plenty of time, they say, for us to get from here to there for the procedure.

Meanwhile I don't feel too bad about skipping the gym today.


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