Thursday, May 3, 2018


For over the last year and a half, She-Beat has woken up almost every night crying out in fear. The format for comforting usually involves us waking her up fully, comforting her and soothing her back to sleep. Originally we thought these were just bad dreams, but starting around March Grey started to notice a pattern with her having difficulty breathing, making us suspect not only sleep apnea, but also suspect that these wake-ups were actually due to her having stopped breathing.

Since She-Beat's diagnosis last month, I've been doing a far amount of reading about sleep apnea: how insanely common it is, how often it is missed with a diagnosis instead of ADHD or developmental delay, how disrupted sleep leads to a host of problems, from delayed growth to dementia and most specifically about the surgical procedures  done in children to correct the problem that actually have an impact.

Today, She-Beat went in for her 5th surgery. This child isn't even 5 years old and she's already been in an OR more times than most humans ever will be. And yet, as the surgeon walked me through the procedure, explaining why we were not only removing her tonsils and adenoids, but also reducing the inferior turbinate, the medical staff found themselves with two parents who didn't need convincing that something needed to me done. To date, ear tube placement has resolved not only chronic ear infections and reduced hearing in both Beats, but resolved She-Beat's inability to walk. It was due to attentive physicians that we found and removed her cholesteotoma, resulting in a 30 minute procedure that simply involved removing the tiny mass instead of the typical 3-4 hour procedure (including MRI while under anesthesia) that most suffer. And for the past 4 weeks, we seen all the signs of how sleep apnea is hurting this little girl: being overly hot, frequent nightmares, extremely tired most mornings and struggling in school. Not doing this procedure, no matter how difficult the recovery, wasn't an option.

Today was none the less hard. Having her fight with 3 nurses, Grey and me as she came out of anesthesia, wanting to rip out her IVs and all the wires leading to the various monitors due to being in pain. Later bringing her home and watching her struggle as pain meds would wear off, all the while knowing we were 10-15 mins away from the next dosing period. We've been warned that recovery could likely take 2 weeks and that it's a difficult one.

Yet, she sounds more clear and her breathing isn't as labored. And there are the stories we've heard since sharing the news of She-Beat's surgery, with parents telling us how their own children went through this procedure and how the drastic positive changes (calmer child, more attentive, resolved developmental delay and growth spurts) make them wish they had done this sooner.

So I'm holding onto that. All while sharing this aspect of She-Beat's story. Because if this makes the difference I'm anticipating it will, I too will be wishing we had found these doctors all that much sooner.


  1. I hope that She-Beat recovers quickly from her surgery. That is fantastic to hear that she already sounds clearer!! How was her first night of sleeping after the surgery?

    1. Last night was rough, but given an every 3 hour medication schedule, it was to be expected. Today is all about hydration, rest and lots of ice cream.

  2. How are things today, Cristy? I can imagine this surgery was weighing heavy on your mind before it, and now it's behind you but you're dealing with the pain and the benefits are yet to come. May they be big and come soon!

  3. Poor little She-Beat! I really hope she's doing better & that the surgery yields some positive long-term results. (((hugs)))N

  4. Hope recovery is going well? I feel for her, and her parents who had to go through it with her. Sounds like it will all be worthwhile.

  5. I hope recovery is going well, it must be so hard to watch your daughter suffer and be in pain. However, it sounds so promising for addressing the issues she's been having, and have good outcomes for the future! Here's to awesome outcomes and surviving the recovery period.

  6. Aww, I'm hoping the surgery helps her! And that the recovery is going well!


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