Tuesday, February 5, 2013

Creatinine Update....

Babygirl had blood work done on Monday.  Her creatinine is 1.3.  While that IS an improvement (barely) from last weeks' 1.4, it still stinks. 

But the transplant team deserves some credit here.  They asked how the headaches were doing.  They respected the fact that SHE'S doing better even if the kidney isn't.  They told us to keep an eye on her and to come in as scheduled in two weeks with no additional interim blood testing.

They believe that a functioning child is at least as important as a functioning kidney.  They're willing to wait it out for a bit, thank God.

I called to schedule her next neurology appointment to try to match it up to nephrology.  They wanted her to come on Wednesday, two days later.  Ummmm.....no.  And then they said never mind, come in two months.  But I can't schedule THAT until two weeks ahead.....

Seriously?  And that call took just over 18 minutes.

In other news, I stumbled over this blog today:  http://oknak.wordpress.com/tag/scott-parker/.  It's a rather interesting view of pediatric transplantation in England.  Their journey makes ours look like a well-coordinated cake walk. 

You don't have to look far to find people who are suffering at least as much as you are, if not more so.


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