august 29, 2012

i mentioned in my last post that we have been dealing with some health issues with adali this summer.  it all started back in june when we left for the dominican republic for the week.  many of us noticed that adali had to go to the bathroom a lot.  like every 30 minutes a lot.  and when she went we had to sit there for what felt like a lifetime because she always felt like she had “more in there that she had to get out, but couldn’t get it out.”  i can probably tell you every detail about airplane/airport/resort bathrooms that you never thought you would know.  at the time i chalked it up to a vacation nuisance probably caused by the fact that she was living in a wet bathing suit all day long.  

i called our pediatrician when we got back home just to make sure she didn’t have any sort of infection.  she didn’t.  he mentioned it was probably stress incontinence from being out of her normal surroundings and that it would subside once we got back into our normal routine.  great.  except it didn’t subside.  after a few more weeks of this and seeing adali’s frustration with the situation intensify, i told jastin to get on his doctor horn and find me a pediatric urologist i could take her to.  something wasn’t right and i knew it.  we managed to get into a pediatric urologist right before our next scheduled vacation.  i was hoping for some quick healing hands so i didn’t have to become friends with every bathroom between here and southern mo.  after an ultrasound and another urinalysis, we were left with no more answers than we started with.  

i knew at this point that adali’s issues were definitely not behavioral and that i needed to push to get answers.  we were scheduled for another test shortly after we returned from vacation.  i was really nervous for this test known as a voiding cystourethrogram or vcug for short.  i was so nervous, in fact, that i almost called and canceled the day before.  however, i knew this was the only way to figure out what was going on. so i kept it and tried to explain to adali, as best i could in 4 yr old lingo, what would be taking place.  it required adali getting a catheter and having an entire bottle of dye drained into her bladder and then them taking x rays while adali urinated on the table.  it was not fun.  at all.  it required me and 2 nurses to hold her down.  she was uncomfortable and in pain and did not want to pee on the table.  i left there knowing i never wanted to have to hold any of my children down while they screamed in pain again.  

they were looking to see if adali’s kidneys were refluxing fluid back into them.  i got a call from the physician’s assistant later that day with the results.  good news…her kidneys were not refluxing.  bad news…she has a very large kidney stone called a staghorn calculi taking up nearly her entire collecting system on her right kidney. wtf!  

the gist of what we know so far is that this is extremely rare in children.  it is very large {she would never be able to pass it}.  it will need to be “carefully” removed.  and it may not even be the cause of adali’s symptoms.  again…wtf!  last week we went to see a nephrologist {kidney specialist}.  we brought her a present in the form of adali’s pee collected over the previous 24 hours {adali is becoming a real pro at peeing in things besides the toilet}.  as she reminded us, she is simply the nerd who looks at the urine to try and figure out what is causing the stone she doesn’t deal with the stone itself.  so here we sit over a week later still waiting on results.

the results will actually tell us if this is a metabolic issue that will need to be addressed through diet or medication.  if they can’t find any metabolic reason i don’t know where we go from here to find a cause.  all i know is that we want to minimize the chances of her having recurrent stones as this can ultimately lead to kidney failure.  no good.   

the good news is that her kidney appears to be functioning normally so far which doesn’t make the removal of the stone emergent.  although, i would rather have the thing out sooner rather than later to see if this improves her symptoms.  otherwise, i fear she will spend her entire preschool year in the loo.  

i will, obviously, post as we receive more information and hopefully a game plan but in the meantime, can you pretty please say a little prayer for adali that we can handle this with minimal emotional or physical pain to her.  my heart breaks thinking about her having to go through anymore than she has already been through in her short life.     

4 Comments ( Reply )

  1. Sonya says:

    Saying LOTS of prayers for sweet Adali and you too, Mom. :-) Watching your baby getting a catheter might be one of the worst things ever. I had to do it with Addison not all that long ago. The worst. I’m SO sorry you all had to go through that.

    Keep us posted!

  2. Sandy says:

    We’ve had to hold down for stitches….not.fun.at.all. Insert lots of mommy tears :( Praying for you all!

  3. Jennifer Teegarden says:

    Oh, I so hope you get answers soon and sweet Adali gets relief. Sending prayers up for you both!

  4. Sara T says:

    Of course you can count on our prayers!! Good Luck with everything!!!

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