January: The Month of Appointments

Nobody has been able to coordinate appointments for Teddy in January, so it was quickly turning into The Month Of Appointments. Honestly, we were going to be driving to Iowa City for planned visits more often than at any point in his life during January. But, I reduced our load a bit now. 🙂

When we saw GI in December, we agreed to give their plan a try. It certainly made sense, and seemed like a great first step, something to try before delving into more invasive procedures. Their plan was to pull out all the fruit and simple carbs from his diet, and reduce his water to a more age-appropriate level. (Most kids his age need 1 liter of fluid; he gets 1.7 liters to keep his kidney happy.) Nephrology (kidney) agreed we could try that, slowly, and with lots of lab monitoring. Keeping the kidney happy is Job One.

So I was supposed to reduce the water by 250 mL for three days before his next scheduled lab draw, then if that seemed to be OK with the kidney, we’d repeat by reducing ANOTHER 250 mL before the NEXT lab draw. Well…. his next scheduled lab draw was three days after his tonsillectomy and I wasn’t really going to reduce his water during that time period. So, fine, I figured we’d just put it off to the NEXT scheduled lab draw, which is coming up on Monday (12/30). But now he’s got this UTI and the LAST thing I want to do right now is a) reduce his water and b) potentially piss off his kidney.

His followup with GI was scheduled for 1/16. Just doing the math on this – 10 days of antibiotics for the UTI then another culture puts us to 1/4 on the antibiotics and 1/8 for culture. He’ll get labs on 1/7, and 1/14. I could in theory get in the first reduction of fluid, but not the second. Considering that this was sort of a major part of what we were following up with GI about… the appointment seemed rather pointless.

So I’ve cancelled that, and saved us a trip to Iowa City this month. (Hopefully. I don’t know how often we’re going to be back to see oncology and the nephs at this point.) I figure once we have a solid game plan in place with oncology and after I’ve talked to nephrology, we’ll develop Plan B for this fluid reduction and I’ll reschedule the GI appointment – HOPEFULLY to coincide with a day we’re already in town!


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