Wednesday, January 23, 2013

We just don't know

We met with the nephrologist a week ago, just a few days after Sara's left lithotripsy. He reviewed all of her previous labs with me. Everyone seems to agree that Sara's stones are struvite stones, which are made of calcium phosphate and are formed from infections. Dr. Gordillo does not see anything else out of the ordinary in her labs that would point to a different type of stone. They don't typically recur that fast so it's rare but not impossible.

She does not have a lot of salt in her urine and there is no calcium oxilate, which would indicate a different type of stone. Her citrate levels are a little low, which help prevent stones. We can increase her potassium intake for now with foods like potatoes, tomatoes, cheese, bananas, and orange juice.

We discussed the possibility of moving up her reflux surgery. Since the stones were forming on the left and that is where her reflux is, maybe that is connected.

He also ordered another 24 hour urine test to see if her urine output has changed at all since the previous one.

The missing piece of the puzzle is the lab results from the stones that were removed in Boston. I have emailed the surgeon and the results are still pending. Unfortunately, the fragments were broken up into such small pieces that the lab is having a hard time running tests on them.

Yesterday Sara had another x-ray and visit with the urologist. Another stone is present on the right now. It was a very faint shadow last week that he didn't want to mention but it's obviously evident now. He has never seen this in a child and he isn't sure what to do. We are on his mind every day to help figure this out. Dr. Rhee stepped out and called the Boston surgeon to get his input. Originally she was supposed to get shock lithotripsy on the right this Monday and her left stent was supposed to be removed. They have decided to move forward with the lithotripsy but keep the stent in for now. There is a 3 month limit on the stents being in her body so we still have some time.

The other concern Dr. Rhee has is whether she will pass the amount of stone fragments the lithotripsy created. The fragments are small but there are a massive amount and they have spread throughout her kidney. I am supposed to start straining her urine to see if she is passing any.

I have never had a moment of asking why all of this is happening. I just haven't. I try to wake up and keep going each day as best I can. To be honest, I'm getting exhausted. But I know full well that I am Sara's best advocate. Absolutely no one will fight to get answers for her more than I will. I have generated a list of questions to ask the nephrologist and emailed that tonight. I can't sit by and just wait. Every day is crucial. I need to push for a step, any step, in some kind of direction.


Heather said...

Oh, JoLynn. You are doing so well and you are handling this as only a mother dedicated to her children could handle it. I hope that you find some answers soon. Hang in there. Thanks for the updates -- I think of you all often and am glad to know what is going on.

Jenny said...

You definitely are being the best mom and advocate for both of your kids. I hope and pray you get some answers soon!