Mar
30

Organism.

Last Thursday, Simone had an ultrasound and visit with nephrology for her post-NICU follow-up. It was originally slated for last August, but the nephrologist rescheduled, and then I needed to reschedule, and then the whole practice moved and the doctors changed and I called and called and was transferred hither and yon and finally, in November, my pediatrician took matters into his own hands and got us Thursday’s appointment. Pediatric nephrologists are apparently like unicorns around here, in that few outpatients are ever privileged enough to see one.

For those of you who weren’t reading last year, or who are unaccountably unable to recite Simone’s medical history by rote, I’ll recap her nephrological journey as briefly as possible. Which, unfortunately, isn’t very. Consider yourself forewarned:

A year ago, they pulled Simone’s umbilical line and a large clot/fibrin sheath was left in her aorta while a shower of smaller clots went sluicing into her renal arteries. These smaller clots caused an episode of acute kidney failure, which resolved, but the fibrin sheath remained. The hope was that it would dissolve on its own without further incident, but sometime later (I see I neglected to post about this, meaning I frankly have no way to remember exactly when it happened) a second episode of acute renal failure made it clear that the sheath was still shedding clots down the peripheral vessels, and hematology got involved. Simone had an intrajugular line sewn in to deliver a heparin drip, which she kept for some time, but which ultimately failed to do anything. Luckily, Simone’s creatinine (measure of kidney function) returned to normal and the aortic clot/sheath/whatever seemed stable, and the expectation was that it would calcify and become part of her aortic wall. By the time Simone was ready for discharge, a repeat renal ultrasound showed only mild hydronephrosis (dilation of the kidneys), and we were sent on our way. The End.

Every specialty that followed Simone in the NICU had to see her both pre- and post-discharge, hence Thursday’s appointment. It was a formality, merely to confirm that the clot was still there, and that the hydronephrosis had resolved as expected. Simone had normal kidney labs drawn in November, and thus I regarded nephrology as a specialty we could check off our list, the only reminder of which would be a scar on Simone’s neck from the IJ line.

{Ed. Note: Here is where the ominous music ought to go.}

So on Thursday we had the ultrasound and made our way through the hospital to the nephrologist. She seemed very nice, conducting a brief examination and then settling into a chair to tell me that Simone’s left kidney had shrunk, and will probably continue to do so, on account of it no longer working.

Now. It is a small thing, comparatively, to have one functioning kidney. Many people are born that way, and Simone is doing fine. But it is never pleasant when your child comes out of an appointment with fewer working organs than she went in with. Sometimes it seems as though having a preemie means smacking up against human fragility again and again. And then once more, for good measure.

Supposedly the damage was caused last year when the clots first went on their rampage, and we simply couldn’t know until we saw that one kidney was growing, and the other was shrinking. Next year Simone will have a renogram to see whether the left kidney is contributing anything at all to her overall kidney function, and whether there has been any damage to the right kidney. They will leave the left kidney in unless it starts causing high blood pressure, which dying kidneys can do, so we’ll check Simone’s blood pressure every time she is at the doctor, and have ultrasounds to make sure her right kidney continues to grow—right now it is in the 50th percentile, and they would like to see it in the 75th as it will have a lot of work to do, all on its own. When Simone gets a stomach bug it will be especially important to keep her hydrated, but other than that she needn’t do anything special to pamper her kidney except avoid a high-protein diet and contact sports, the latter of which, given her genetics, should be no great hardship.

When I got home I Googled “one kidney,” and it turns out the condition has a name, Solitary Kidney, which is best said in a sorrowful, declining tone. Since then I have been preoccupied thinking of this Solitary Kidney hopping damply down the street to a movie theater and ordering a ticket for one, then sitting in the dark eating popcorn while the light from the projector plays over its nephrons. Afterward it might hunch on a bar stool, staring broodily into the depths of a glass. These images bring a little tear to my eye, but on behalf of the kidney, not my daughter. We are used to these things by now, or getting there.

I do, however, think that Simone needs one of these.

By Alexa | Posted in Ceci N'est Pas Une Ecrivaine |