just her and her kidneys

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source (because eff you SOPA)

I wish to tell this both to Annika, and to myself.

The thing about appointments far in the future is that they tend to creep up on you…they start off so far away you can barely squint enough to see them. Then? BAM. Staring you straight in the face. In three weeks, we have a Pediatric Nephrologist appointment at a Children’s Hospital, two hours away. At 9:00am, Annika will be enduring her third renal ultrasound since June of last year, hopefully holding the hands of at least one of her parents…but who knows?

And what will they find? Who knows? I am struggling with this upcoming appointment. I know it’s the best care for her, I am glad that our pediatrician cares enough about her well being to push for better answers. But that doesn’t stop my blood from running cold when I hear the list of medical doctors I can leave a message for at the hospital I’m bringing my daughter to: oncology, cardiology, gastroenterology, neurology… It seems so cruel that “pediatric” can be slid in front of all of these -ologies. And then it hits me that I have it pretty good here, in comparison.

I heard from a friend once that took a course on how women are like spaghetti and men are like waffles. Spaghetti wraps around into itself, the long noodles twist and turn and intertwine with everything else on the plate. Nothing is solitary or stands alone, it is everywhere at any time. Waffles, those rigid square boxes only spill their contents into each other when they are full to bursting. I’m definitely spaghetti.

My thoughts on Annika’s kidney infections are never far from the surface. I worry about the fact that she’s been on antibiotics for almost 6 months. I worry that they’ll find scarring on her kidneys and I worry that I don’t know what that means. I worry about what they could find that isn’t even in my scope of possibility yet. For fucks’ sake, I even worry that they’ll find nothing and I’ll walk out of there on edge, waiting for the next kidney infection, the next hospital visit, the next IV.

Truth is, I don’t know more than I do know. Is the fact that she can’t seem to get nighttime potty trained due to her kidneys? How long does this take to grow out of? Will she always be susceptible to infection? Have I damaged her fragile little immune system by having her on antibiotics for so long? Are there long-term effects of that I will be kicking myself for later? Does she have a condition? Will we have to watch her get yet another catheter?

So, in an effort to hide my fear from her, we do A LOT of talking. We are big talkers in this house. When they asked me what their grandparents meant by a graveyard, I told them there were dead people buried in the ground. When they asked me why Jenifer brought a new boy to our house, I told them what divorce means. We have private parts named vaginas, that deer Daddy shot is dead & that bacon you’re eating used to be a pig. And no, Annika…I’m not sure if they’re going to put another needle in your arm but if they do you’ll try to be brave and so will Mommy. Because it’s important that you get better and it’s important that we trust the people that can help you with that.

If I believe at all in the quote at the top of this post, I have to trust that all of this is a necessity. This fear and this pain in my heart will teach me…something. I sure as shit don’t know what that is yet. But maybe if we’re all patient, we’ll find out. And maybe when we find out, I won’t be so scared anymore.

But until then? Terrified.

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9 thoughts on “just her and her kidneys

  1. I would say the worst part is not knowing. Once you have an answer, you can act and react and DO something. But when you don’t know, you just spin all the different crazy stuff in your head until you’re loco. Hugs, lady.

    • YES! Yes, this.
      It’s all just a wild tailspin of doom. And I’m sure half the shit in my head couldn’t even actually happen, but I’ve convinced myself of the very very worst.
      It’s this incredible talent I have. Comes in very handy with three kids. ::headdesk::

      Thanks hun. Imma read this over & over & over in the waiting room in a few weeks.

  2. :( I don’t blame you Mama. Please don’t worry about the ‘what ifs’ and concentrate on getting her better. I love her…you know this. I love your whole damn family and I will send positive healing vibes your way. xoxoxo Please let me know if you need A N Y T H I N G.

    PS: Night time potty training isn’t a concern until age 5 for girls (6 for boys) and even then, there are bed wetters…we have a family history of it. None with kidney issues. (Hope this eases your mind a little :) )

  3. Eeek, I wish your little one the best! I will be thinking good thoughts! My girlies (both of them!) have had issues with their bladders. They both had ‘renal reflux’ and Lydia grew out of hers but Arlene had to have two surgeries to get it all right. They both had to go through ultrasounds and VCUGs. The VCUG’s they despised because they weren’t fun. (I hated them too – HATED THEM.) Has A ever had to go through one of those? Thankfully with the girls’ reflux they just got urinary tract infections, never kidney infections. They were both on treatments of antibiotics for years too. I was always SO SCARED that they’d get kidney infections because kids with reflux typically do. I dreaded the ultrasounds too! So with you there. As I said both of my girls grew out of their issues, and I hope that will be the case for A!

    • You totally get it. Yes, they’ve tested her for reflux & say she shows no signs. So far, no sign of scarring on her kidneys but she needed to be 6mos out of an infection to know for sure…we couldn’t keep her 6 WEEKS out of an infection. It was so exhausting and scary.
      Yep, she’s had one VCUG (which my husband was there for…can you even imagine?!) and she’ll have another one for this upcoming appointment too. Just so awful:(
      Do your girls have any leftover issues from being on antibiotics for so long?

      • The only issue the girls had right after they stopped their antibiotic treatment is that they had to be prescribed stronger antibiotics when they got sick because their bodies were sort of used to the other antibiotic that they were taking for so long. We were worried about the long-term antibiotic use too. The doctors assured us that it was fine, but we worried about it a lot. They’re three years out of antibiotic use and there are no issues at all.

        Those VCUG tests are the worst. I would get so upset because the girls would get so upset about them. I was the lucky one to take them to all of those appointments!!

  4. We are sending all our love and a swift recovery and hopefully some answers! Life is scary and tumultuos but I am sure everything is going to be good.
    She is one brave little girl and she has some awesome parents to get her through anything :)

Talk to Meeeeeeeeee

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