Sunday, April 14, 2013

The Puzzle

We made it to day 30.

So we have a new record. 

But now Emily's back in the hospital.

Emily was miserable Friday night.  She was twisting, rubbing her belly, and asked to go down for a nap and bedtime.  Around 1:30 a.m. she threw up.  We had four hours to get to WVU and get her ACTH level checked.  So I threw stuff in the car and beat it for Ruby.  BUT when we got here she hadn't thrown up again, she was pointing and talking and SMILING.  We hung out in the parking lot until around 3:00.  Then I took her home and figured she maybe just had a belly bug. 

Around 5:00, having missed our window to get her ACTH level checked, we came back.  Sleep deprivation and frustration maybe me teary.  Ugh!  Emily saw the needles coming and said multiple versions of Ow! until the blood was drawn and the IV needle taped into place. 

If I'm understanding,  the kidney people are ruling out renal tubular acidosis, she'll be moved back to GI, and an EKG is showing prolonged QTc.  We may meet with cardiology while we're here or for our scheduled appointment in a week. 

This kid constantly keeps us guessing.  

Life with Emily will never be mundane. 

God continues to refine us.

1 comment:

  1. Yea that she made it to day 30 but boo that she didn't make it to day 31. I am so glad you got to talk with someone who has CVS. What a great insight that must have been. Praying that she is feeling better!
    Praying for all of you dear friend!!
    Love ya!