I spent some time talking on the phone with one of our nephrologists (numerologist? Really, Spellcheck?), Dr. A, about Babygirl's test results, medications, and complications.
The interpretation of her lab results? First I have to explain the language. They measured both peak levels (easy to understand, the high blood level of the medicine a fixed time after the dose, which may not actually be the very highest but based on studies of other peoples' timed levels is considered to be statistically representative), and trough levels (the low point right before a dose, what is leftover from the previous dose).
Generally speaking, trough levels, since they represent the lowest amount of medicine in your blood, are kept in a "therapeutic" range. If that level is too low, the medication can't work because there are times when there isn't enough of it. The peak levels are less important unless high levels of the drug cause some sort of damage. But roughly speaking, the ratio of peak to trough can indirectly assess how much of a medication is absorbed and how quickly the body gets rid of it.
Babygirl has had trouble maintaining good trough levels despite quite high doses of her meds. But when they assessed the peak levels, they are much lower (around half) of what was expected based on the dose. Translation: Her current trough levels are adequate, and the peaks are too low to do any damage, so no change for the time being.
Dr. A feels that Babygirl's problem with her neutrophils will stabilize. She's on the best meds for the time being, but will need ongoing close monitoring (translation: We're spending the summer in Philly).
I don't think I really feel better about the risks. And I don't think that I'm happier with the medications. But I AM reassured that the doctor listened carefully to my concerns, and responded to each of them with a logical, educated, reasonable answer. And I'm reassured because she is also willing to admit that there is a lot we don't know and can't predict.
It's not less terrifying. But I feel like someone in charge was willing to hold my hand.