Christmas News: Drug-resistant UTI and Pathology results

The nephrologist called us on Christmas Day with news. He said he knew some parents would not appreciate a Christmas Day phone call and he likewise knew that I was not one of those parents. Which I appreciated. Because I WANTED him to call!

The final culture results from Teddy’s urine finally came back, and it’s growing enterobacter cloacae. It’s a multi-drug resistant bundle of awesomeness. Hopefully this explains the excessive clinginess. I mean, I love holding my babies, but for the past week, I’ve *not* held Teddy for a total of about 3 hours. All week. Not 3 hours a day. 3 hours in the week. Daddy can’t hold him. Only mommy. And all the time. He doesn’t really play much, just wants to be held. Sometimes a wrap or the mei tai will be acceptable, but many times, it just mommy’s arms. Not mommy’s lap. šŸ˜¦ And I mostly attributed that to post-op pain, but he’s really probably been a ball of misery.

So a UTI in a post-kidney transplant kid is nothing to be trifled with. We’d originally been told he’d be readmitted for IV antibiotics, but the plan now is to try treating at home and see how it goes.

And the preliminary report on Teddy’s tonsils indicates EBV (epstein barr virus) in the tonsils but no lymphomas. That’s good (no lymphomas) but evidently the EBV presence is concerning. We have an appointment with oncology on the 2nd and will find out more, and possibly do a PET or CT scan that afternoon (or later) (I honestly can’t imagine doing it that day since it’s sedated and so we’d need to withhold food/fluid, so we’d need to know in advance…). We’re also lowering his immune suppression, to hopefully allow his body to do the work of fighting the EBV. So we’ve completely stopped one of his suppressants (Imuran) and reducing the level of his other (Prograf) by half. Yikes. Yes, this does put his kidney at risk. It’s a balancing act.


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