Friday, January 25, 2013

Week Ninety-one - Forgiveness.....

I've forgiven myself for many things in my life.  We all have - how could we go on living if every day was consumed with guilt for things that are long past and no longer under our control?  It would, I imagine, resemble hell. 

But the parents of chonically ill children live in a special type of hell.  It's the hell of second-guessing, the hell of I-should-have-seen-it-coming, the I-wish-I-knew-then-what-I-know-now hell.

I've forgiven myself for not noticing that Babygirl couldn't see when she was little.  She was surrounded by developmental experts and NOBODY noticed.

I've forgiven myself for not realizing that her kidneys had failed.  The symptoms were subtle, and nothing I could have done would have changed the course of the disease in any way.  Nephronophthesis always ends in kidney failure.

But the headaches.  Oh, Lord, the headaches.

Babygirl never suffered as a consequence of her vision, except that it put her a bit behind at school.  The suffering she's had due to her kidney disease was sadly inevitable.  But the severe daily headaches are looking to have been triggered by the anti-rejection medication, Rapamune.  Starting the Rapamune was a good idea.  Continuing it so long after I had begun to suspect it was the headache trigger was NOT a good idea, and  I began suspecting that the Rapamune was the trigger as early as last October.  I mentioned it to the transplant team and brought it up with neurology.  And despite my suspicions, I allowed them to put my child under general anaesthesia and stick needles in her spine rather than insist that they make a switch FIRST to see if this was what the problem was, which will all turn out to have been unnecessary if Rapamune has been the culprit all along.

It's easy to say the tests were needed to rule out a subtle infection.  In fact, it is inarguably true that that is the case given her somewhat meningeal symptoms.  But....those symptoms were part of the migraines, it turns out.  And the migraines, triggered by the medication.... A hopelessly circular line of logic that leads back to my passive acceptance that the specialists are smarter than I am and know more about it all than I do.  I was afraid of the wrong things.

The crazy part of this is that, given Babygirl's overall state of crappy health, if they'd switched meds first and she went back to two headaches a week instead of seven, those concerns would still exist.  And  I know that. 

But I flash back to the nights of our last hospital stay, and her suffering and pain.  Her preventable, unneeded suffering and pain. 

It's tough to make choices for your child that cause suffering in the name of making that child better.  Dialysis was one such choice.  It was do or die, quite literally, and as terrible as we felt about it, there was nothing on this earth that we could have done about it.  Installing a new kidney was hardly painless, and her repetitive hospitalizations for infection and rejection haven't been a ball of fun either, but they ALL had a life-or-death feel to them that was TRUE.

This last one....damn.  Damn.  Damn..... It's tough to forgive.


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