thursday, october 11

last time we left off we were waiting for the results of adali’s metabolic testing to come back to see if there was some explanation as to why a stone this large would be in her kidney.  there was nothing found in her urinalysis that could explain anything.  ultimately this is good news as there is less of a chance this will turn into a recurring situation.  that being said, it’s still frustrating to not know how something like this occurs.  onward.

that following week i met with the pediatric urologist to discuss next steps, particularly how we get such a large stone out of such a little girl safely.  jastin happened to be out of town and wasn’t able to make this meeting which was a huge bummer considering, ya know, he’s the one with all the anatomy/surgical knowledge.  in saying that, i had done a fair amount of research beforehand, read medical articles, looked at studies on the different approaches and felt i had a very basic understanding of what would need to take place.  however, i left the meeting feeling more confused than ever.  because of that, and because i didn’t feel confident in the approach the pediatric urologist wanted to move forward with, i decided, along with jastin, that it would be best to get a second opinion.  after some further research of pediatric urologists in the area, an initial consultation and a few phone calls from jastin to other urologists around the country, we now have a plan i am very confident with.  

we have made the decision that adali will have this beast of a kidney stone {> 2.5 cm} surgically removed next month by a team of medical professionals primarily comprised of an interventional radiologist and a pediatric urologist.  she will first have a series of scans done over the next few weeks to aid the interventional radiologist to the safest route from the incision in her back to the stone in her kidney.  the consultation with our second opinion physician confirmed just how large this stone is and that this may not be an easy removal.  they will leave a stent in that leads from her kidney through her back until the following day when they will take her for an x ray to see if there is any remaining stone.  if there is, she will go back to the OR until they are sure all fragments have been removed.  

obviously it is going to be a tough week.  adali is aware on a very basic level of what will be happening and she is nervous and scared.  no decision regarding medical procedures for your children are easy but i feel good that this gives adali the best chance of putting this behind her for good.  we have lots of fun things planned between now and the surgery to keep her occupied and not thinking about what lies ahead.  plus, she’s tough…we all know that already!

as to why this all happened in the first place…we still have no answers.  both physicians we met with want to chalk it up to her prematurity.  although this is a very real possibility, it doesn’t make me hate the answer any less.  i always feel like it’s a cop out answer.  ”oh we cant figure it out so we’ll just say it’s because she was born early.”  i get that a kidney of a baby born at 28 weeks doesn’t look or work like a kidney to a baby born at 40 weeks but it’s not like this is a common thing for preemies.  it’s not.  but whatever, attribute it to the moon if you want, we know that she is going to have to be monitored closely for awhile to ensure it doesn’t happen again.  so if her prematurity {or the moon} mean she won’t have to deal with this ever again…go ahead and blame away.    

3 Comments ( Reply )

  1. Sara T says:

    Poor little thing!! Prayers for all of you!!!

  2. Tina says:

    I can’t imagine what is going through her head but I know you and Jastin are great parents and will pull her through this just like it was another day. Praying for your comfort, her strength and for everyone’s health. Stay being the great mama you are!

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