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Average Supermom

Able to leap small children with a good running start and not spill my wine.

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Update on Our Toddler’s MCDK Diagnosis

Feb 24, 2017 · by Sean

*Note: Evan had his surgery on February 3, 2017 and everything went very well.  I haven’t had a chance to write an update for that, but … you know … life happened …

I have been relatively quiet on the topic of Evan’s MCDK diagnosis these past few months. It is my nature to retreat internally when things aren’t going as I had planned. This is one of those times.

Remember my excitement over his diagnosis that there were no more cysts on his little kidney? Well, that is still the case, and I’m still very grateful for that, but there is more to the story now.

Since his birth, Evan has been under close watch by a pediatric urologist who has ordered periodic ultrasounds to keep track of his precarious little kidneys. We have had several of these tests since July and what was looking like good progress for a while had plateaued this fall. In November, the doctor ordered a Mag 3 scan, which is basically an MRI taken while dye is injected into his little body, allowing the MRI to capture the performance of his urinary tract.

To be honest, the day of that scan was on par with the stress level of having him via c-section. My anxiety was through the roof. Because he is so little and so chubby, it took three tries to get an IV in his tiny foot. I have never seen a baby scream in pain like that before and I hate the thought of having to do that again.

If CW wasn’t there to step in and hold him for me, I would have melted into a useless puddle on the floor of that tiny hospital room. That’s what he does, though. He is there, ready and willing to take the hurt away from us. And I am so thankful for him, especially because his steadiness is so needed now.

The scan showed that he has a blockage in the ureter on his left kidney. While this is lesser than an MCDK diagnosis, it still isn’t ideal. Not having this repaired early could lead to serious problems throughout his life, including kidney stones, dialysis, and even cancer. This is never something a parent wants to hear, but we are lucky that the fix is simple enough and his doctor performs one of these surgeries a month on average.

So, in a couple of weeks, our sweet little chubby dude is going to have surgery to repair the blockage in that ureter.

It is invasive.

He has to be put under. And intubated and all of the things …

I still haven’t come to terms with all of this.

As with most difficult situations, we work through logistics to deflect from the brevity of it all. A nanny has been booked for a few weeks prior to the surgery. He has to stay out of germy daycare to ensure he is healthy for the procedure. Grandma’s flights have been booked for her to come help with him in the days leading up to and just following the surgery. CW and I have coordinated time off from work for his recovery period.

We have also told Ava what is going on. She is 10 and old enough to understand. Keeping her in the dark about all of this just didn’t make sense.

And now that all of the details are managed, we have nothing left to do but deal with what is about to happen to our little guy.

It’s hard.

Real hard.

While my blog is called the Average Supermom, please know that I am an average mom in every sense of the word. I stress, I worry, I guilt, I care beyond my control. And in the end, all I can do is just what I was made to do, be his mom. In every sense of that word.

I ask that you please keep our sweet baby in your thoughts. We appreciate your wishes for a speedy recovery and a positive outcome. I will do my best to update you on the outcome. Please do follow me on Facebook and Instagram for the most up to date information.

XO

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