I called Quinn’s nephrology nurse today to get lab results faxed to me. The receptionist came back on the phone to tell me that Dr. Kind needed to look them over and call me.

The doctor needing to call is never a good sign. Almost never. No, never. Never a good sign.

I’m sad to report that Quinn’s anemia levels are still just a tad high for insurance approval for EPO - so, no way to give her some relief from her tiredness. I had hoped it had lowered a little bit.

Quinn’s creatintine is holding steady at 1.8 (has been as high as 2.0 and as low as 1.4) throughout the past 14 months. Her BUN is an alarming 82. Her BUN has been perplexing, to say the least. The creatintine, which shows kidney function (the NIH said she was about 23% function in April), but it doesn’t match up with the high BUN. For reference, Gage’s BUN was in the 80s when he started dialysis. His creatintine was 5.8 - without dialysis he would have died in a matter of weeks. A high BUN/low creatintine would usually indicate dehydration. Except Quinn is a great water intaker. She frequently drinks water throughout the day, keeping a cup by the water dispenser (from the fridge I detest, but that is another story). Thus, adding a perplexing element.

There isn’t much we can do unfortunately, which brings us to the art of medicine and not necessarily the science of medicine because of the unknown factor. We are going to change a med she is on (a diuretic to help with the lack of concentration in her urine) to a different one. We will redo labs next week and see if the high(er) BUN is a reflection of leftover camp fun - meaning she didn’t have the usual routine of drinking water. If the number is still high we are going to admit her to the hospital for IV fluids and do her labs again right after the fluids. If the BUN lowers then we know it is a water retaining problem.

This is not a simple problem to correct. The two treatments would include regular hospital IV fluids (what? a couple of times a week?) or overnight fluids through a port in her chest - which adds a certain amount of complications to her little life. I know. Invasive, right?

Such is the life of a sick kid. While the unknown territory feels familiar (in a weird way), this particular alarming symptom isn’t one we’ve experienced before. I want to say that I am used to unknowns being a normal side affect of ARPKD but they are still always hard to process. And scary. Sadly, being scared is a part of the package too. There is always an undercurrent of fear. No matter how stable the kids appear to be. The undercurrent of fear has just shifted a little bit more to Quinn.

Different symptoms, different child. Same waiting, same fears.

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