I Don't Understand

On Monday, despite the supplement, her potassium level was lower.  She was admitted to the hospital. 

It was a week of tests and confusion.  I understood why we were there but I didn't understand how we got there.  They explained her potassium level was on a decline since she arrived home three years prior.  Her kidneys were wasting potassium and we needed to figure out why.

But things were going well, for us.  I understood that for most kids this would not be considered  well but for us, it was good.

Kidney stones were discovered in her left kidney.  The morning after she was admitted, the Resident working with the kidney doctors came in early in the morning.  She said she had been up all night researching and felt she had the answer for everything  QiuLu had experienced since she came home - kidney stones, vomiting, Failure to Thrive, inability to eat.  She thought she had Bartter's Syndrome.

Interesting.  The great debate since she came home was if she was premature or if she was small for gestational age.  Many physicians felt to be one pound at birth would not allow her to survive in China.  They obviously did not see the determined child I had.  I was convinced her determination caused her to survive.  That negative quality was so positive for her.

Several days later and many tests later, some of which the hospital had no experience in running, QiuLu was officially diagnosed with Bartter's Syndrome.  A rare genetic condition that causes the kidneys to waste electrolytes.  It is estimated to affect 1 in 1.2 million people.  Due to the fluid build up in pregnancy, it can cause small for gestational age and a premature birth.

They kept her in the hospital a few more days to get the medication started.  I asked how much experience the hospital had with the condition and the response was "we have seen it."  I do not know if they saw it in person or textbooks but we have had a few medical encounters since the diagnosis and we are always met with the same response - "how do you spell that?"

They will tell us the prognosis is unknown.  I assume that is because it is so rare.

I am convinced this child is meant to be here.  Nothing else explains how she survived this long without treatment.  I am equally convinced we are meant to be together.  There is a purpose. And I am on the journey to figure our that purpose.