Earlier this evening, I received a call from Tyler's pediatrician about some labs we had run. Let me back up though. Last week, we attended our first 4p- national support group conference (more on that in a later post). We attended a session highlighting nephrology/urology and the importance of monitoring blood work due to the high level of chronic kidney disease and renal failure associated with 4p-. Upon returning home, I discussed this with our pediatrician who suggested we go ahead and draw the labs since we were already there. Fast forward to the phone call were she informs me that the levels we were originally looking at were within normal range. However, his calcium level was high and raised a red flag. "Way too high" were her exact words. She will be consulting with another doctor and we will try to pinpoint the exact cause of the elevation. She is off on Fridays (of course) so we won't get any more info until next week.
Now, I should of learned my lesson after googling "Wolf-Hirschhorn Syndrome" after receiving Tyler's diagnosis. But nooooooo: I have no patience. I want to know. I go into Nancy Drew mode and try to channel my inner Dr. House while researching all the possibilities for elevated calcium in the blood. I scare the shit out of myself reading about cancer, kidney disease, and so on and so forth. Hopefully it's nothing. I'm praying it's nothing. But now I am wondering. Will it always be like this? I feel programmed to think the worst. Goodnight for now, I'm off to sleep (hopefully!!!)
~A