The First Week......

The first thing they do when your kid has a disastrous lab report is to repeat it.  It makes sense - make sure there was no mix-up at the lab, in labeling or in transport.  So here's an 11 year old, never sick a day in her life, who, on her well visit to the doc the day before got 3 shots AND bloodwork.  And now I get to explain to her that we have to go back and do it again.

Bless her.  Bless her over and over and over - she just looked me in the eye, shrugged and said, "Okay!".  We went to a local draw station - the one at my office as a matter of fact.  The phlebotomist is good, and does a LOT of kids, but for some reason was unable, after 3 tries, to get any blood from my baby.  So she sends us to the hospital with a note for us to only see Frank. 

And bless Frank, too.  He hit it on the first try and made her laugh doing it.  I now have his daily schedule, and we only go for blood work when he's there.  Because the second thing about having a kid with disastrous blood work is, they KEEP repeating it.

We had an ultrasound that first day - aside from the fact that both her kidneys appear to have chronic kidney disease, all is normal

Then off to the specialist, a 70 mile drive.  The nephrologist sends my baby off with a specimen bottle, and then turns to me and says, "We will be discussing transplantation.  It is my experience that it is important to be as frank with a child as it is possible to be.  How do you want me to approach her on this?"

Now, I have to say, that I had already been crying every day.  A lot.  And I also already knew that we'd be discussing transplantation.  But....but....I'm not READY.. She's not READY.  I'll NEVER be ready, ever.  People die waiting for transplants, and die having them, and what about treating her with something first???? But I know it's not going to take my baby long to fill up that little cup, and I have to decide, right NOW, what to tell this total stranger about what kind of kid my daughter is and what I think she can handle.

"She's young for her age, doctor.  It might be appropriate if you approach her more like you would an 8 year old instead of 11."

And for the next 2 hours, that's what he did, educating both of us about what he thought was wrong (Nephronophthisis) and what we needed to do.  He told us that he expected her remaining kidney function to decline to a degree that we would need to meet the transplant team in the fall, and that he wanted us to "enjoy our summer" and send her to camp, go to the beach, and behave as normally as possible.

Oh, and get this blood work done tomorrow......

I may never stop crying.

DeeDee