skye teresa

It’s been a while since I’ve posted an update on Skye.

Background:

The week of 9/11 in 2001, when Skye was 3, we were in the hospital with her for several days due to a bad kidney infection that they couldn’t knock down. We ended up on prophylactic antibiotics for a year or two but she was still getting infections. Skye was diagnosed with levels 2 and 3 reflux in both kidney’s which precipitated the infections.

And so in 2003 when Skye was 5, we opted for an outpatient procedure where they would inject deflux into skye to stop the reflux.

This seemed to help and she was doing well until 2005 when Skye started having intermittent flank pain every 30-60 days for 24 hours. No one could figure out why and no one suspected her kidneys, though we explored that with every doctor we saw.

Finally, we decided to seek out the advice of Dr. Gabe Mirkin, an author and medical radio show in the DC area. He suggested we get a sonogram at a local lab the next time Skye has pain.

Skye had another episode on 27 January but because it was a Sunday no labs were open. After some debate we decided to go to the ER and the sonogram showed nothing. However, the ER doc decided to do a cat scan as well and that revealed that Skye had an enlarged left kidney (it was hydronephrotic) and kidney stones in both kidneys. Alarmed, the ER doc called the surgeon at Johns Hopkins who had operated on Skye in 2003 and he asked him to send Skye to Johns Hopkins immediately. By the time Skye arrived at Hopkins in an ambulance in the early hours of Monday 28 January, her pain – per usual – had subsided. The doctor sent Skye home to see if the stones would pass naturally and committed to destroying the stones with a laser (laser lithotripsy) and removing them on Tues 12 Feb if they didn’t pass.

They didn’t pass but on 12 Feb when the surgeon went in to remove the stones, he found no stones. What, in fact, had happened was a complication of the deflux the surgeon had injected around the opening of the ureter to stop the reflux: the deflux had calcified on both sides. The body sometimes reacts to a foreign object by such a calcifying process). The urological and radiological literature indicates that this was only the third instance of this ever occurring in the US. Our doctors have notified Q-Med, the Swedish company that makes Deflux and the FDA as well. They’ll also be writing up Skye situation in a future journal article to assist other doctors and parents. Though the surgeon put a tube in Skye’s left kidney to aid its functioning for 10 days, subsequent tests revealed that Skye’s left kidney was only functioning at 4%. Both our surgeon, a professor at Johns Hopkins, and a pediatric nephrologist at the University of Maryland Hospital that we sought out for a second opinion both believe that the left kidney’s functioning will not come back.

Today:

And so now our job is to test the right kidney from time to time to ensure it does not go the same path as the left kidney.

The good news is that you can live to be 100 on one kidney and Skye’s right kidney is functioning properly. Moreover, Skye is today in no pain, back at school – a healthy, happy child. What’s also good, is that we are alerted as to the possibility of these kinds of problems with her right kidney and we can watch for it.

The concern is that – just as with the left kidney – Skye has struggled with reflux on the right as well and her right kidney also has the deflux complication of calcification.

Our next set of tests are in June.

So that’s the latest. Thank you for your concerns and your prayers.

Past posts on Skye:

• first post on Skye
• second post on Skye
• third post on Skye
• fourth post on Skye
• fifth post on Skye
• sixth post on Skye
• seventh post on Skye
• eighth post on Skye
• ninth post on Skye
• tenth post on Skye