wednesday, february 20

kidney collage1

on november 16, when adali’s surgeon came in and said he felt confident all of the stone in her right kidney had been removed, i wanted to believe this chapter was over.  i knew it wasn’t, but it was hard to not slide back into normal life, celebrating the holiday’s and planning summer vacations.  in december, adali’s internal stint was surgically removed without a hitch and we left the hospital that day with the promise of a phone call when the results from the pathology of the stone came back.  the phone call came soon after where a bunch of words were spewed out by her physician that promotes the automatic parental response of “what does this mean?”  calcium phosphate…calcium oxalate…renal tubular acidosis…uhhhhh?  i just wanted to hang up the phone, pretend he never called and go back to making lunch for the kids.  that phone call made it real again.  i know what your thinking…it’s not like you got a phone call saying your daughter’s cancer was back.  but here’s the thing…i’m not one for my kids outsicking other kids.  i’ve done the whole pray for your kids life before.  i don’t want to do it again, and quite frankly i don’t want adali to have to deal with anything else even remotely medically traumatic ever again.  she’s been through enough.

a few days after that phone call a package arrived addressed to adali.  gracie gets so excited for packages so i let her open it as soon as she got home from school.  what was inside?  a giant orange jug with specific instructions on how to collect her urine for 24 hours.  i think adali could sense my frustration in the whole matter because she looked at me and said, “that’s ok mom, i’m really good at this.”  she’s one of a kind, i tell ya.  and she’s right.  we’re pros at this by now and thankfully adali sees it as a bit of a game.  no needles.  no worries.  my girl can pee in cups (and jugs) like a champ.

after aforementioned giant jug was sent off to the lab,  i called to make an appointment with nephrology as instructed which leads us to last week where we headed back down to children’s to discuss the results and to formulate a plan moving forward.  the results showed her calcium in relation to her body surface area is high.  there were discussions of distal renal tubular acidosis and whether she should be tested for it.  i quickly decided against it wen i realized the test required an overnight hospital stay and other not-so-pleasant things.  besides, the treatment, should the test come back positive, wouldn’t look much different than the plan discussed anyway.  so we left with the understanding of putting adali on a low dose diuretic which is not what i really wanted to do, but until we can get some other things straightened out and have a scan to see if there is any new stone growth, it’s what’s needed for now.  and because the balance of calcium between the blood and urine can be a tricky one on a diuretic we will followup with blood draws to make sure everything is in balance.  THIS adali does not like.  and really i don’t blame her.  but she is tough.  and we will do whatever is needed to make sure we never need a redo of last year.

so this is the latest until we go back in a few months for a scan to check for any new stone.  if you are in the praying mood, we could use some for no new stone growth and for us to figure out a way to get a lot more fluids into adali on a daily basis.  this is a tough thing for us right now as we walk a fine line of trying to get as many calories in her through foods to keep her on the growth charts and getting as much fluid in her to help prevent future stones.

One Comment ( Reply )

  1. Sarah Filchak says:

    Could you try smoothies to not only increase the fluid but you can also “fatten” them up with peanut butter, protein powder, non-dairy creamer or powdered milk to add extra cals.

    I’m sure you’ve done all the research and have done this already, but just thought I’d put it out there.

    Prayers for you and your family,
    Sarah

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