Wednesday, October 8, 2014

Things Just Got. . .Interesting

That's what I heard from the nephrologist when I took Lily to her appointment.  It was a routine appointment, just the normal six month checkup.  This, however, was with a new doctor.  I don't know why, but her usual nephrologist quit the practice.

That just may have been a small blessing.

Usually, when we would go see the nephrologist, he would not bag Lily to get a urine sample.  To help make a long story short, let's just say that cathing Lily is very difficult, and catching her urine in a bag can take up to 2 hours.  Usually, he'd ask how she was doing and occasionally order bloodwork.

This time, probably because she was seeing a new doctor, this new doctor ordered her to be bagged for a urine sample.  Bear with me here, but Lily wasn't going to see the new doctor.  She began the session with yet another new doctor but not THE new doctor.

She was bagged, although not for a sterile catch, and we waited.

And then THE new doctor came in.  And that's when she said, "I wasn't going to see Lily today, but things just got. . .interesting."

Apparently, Lily's protein level in her urine was high.  OK. To say high, that's an understatement.  It was HIGH.  Like, off the charts high.  Over 500.  To understand how high this is, the normal amount in a random sample is normally less than 8 mg/dL.  So yes, HIGH.

According to the doctor, this could be something called nephrotic syndrome.  At the time, Lily was sick, so the doctor wants to recheck her tomorrow, since she is now well.  But then, I spoke with Lily's pediatrician, and she said the most she's ever seen it get when a child was sick was in the 30s.

So tomorrow, the recheck.  And if the protein levels are still high, Lily will have to be sedated to have a biopsy on her kidneys, so I'm a little nervous about what tomorrow is going to bring.

On the other hand, I am so thankful.  Had Lily's original nephrologist not left the practice, she probably would not have been bagged, and who knows if bloodwork would have been done.

Another good thing that may come out of this is that if Lily does have to be sedated, we're going to schedule a hearing test to be performed while under.  Lily's ear canals are so small that they can only perform a hearing test that requires sedation.

Which brings me to another blessing.  One of the physical therapists associated with Pattison's asked me if Lily could take part in a research project that she is doing.  It's called SMART, and I can't tell you what that stands for, but I can tell you that it has to do with a person's reaction to external stimuli and what that says about that child's communication.  I am in no way doing this justice with my explanation.  What I know is that Lily smelled and tasted and saw and felt and heard different things, and her reactions were recorded.  Well, we found out that Lily did not perform well on the hearing part.  We knew she couldn't hear well, but exactly how much, we didn't, and still don't, know.  And whether that is an audiology issue or a neurological issue, we don't know.  But if Lily goes for that biopsy, we will find out.

So I'm not hoping that Lily has to have the biopsy because she doesn't do that well coming out of sedation, but if she does, we will finally have a chance to get that hearing test done, and we'll be able to find out for sure how well--or how poorly--Lily can hear.  We'll also find out what's causing these protein levels to be so high.  But I'm not looking forward to that.

1 comment:

  1. Oh, my. Grateful for blessings, but praying for good results tomorrow (or today?) Hang in there, mama. You guys are in my prayers.