Wednesday, April 18, 2018

Spoke too soon

On Monday, She-Beat was formally diagnosed with sleep apnea. In the midst of moving and transitioning, she's been waking up in the middle of the night choking and wheezing and snoring has become routine. One night it became too much and after dealing with a screaming Grey who was clearly scared out of his mind, I got her in to see a new medical provider where she immediately got a referral to the local sleep clinic.

The diagnosis is a double-edged sword. First, we have an explanation. And this ENT has suggested that this could be the underlying cause for She-Beat's developmental delay as we know that poor sleep is linked with learning difficulties. In light of the fact that there is a growing body of evidence about the links of poor sleep quality with early onset dementia/Alzheimer's, ADHD, diabetes, high-blood pressure, etc, none of this is surprising and it actually gives me hope that in combination with continued therapy we may end up with a kid who once again falls into the normal range.

But I'm also insanely pissed off that this was completely missed by the Harvard-educated ENTs in Boston as well as the daycare we divorce. These supposedly world-class physicians missed something that was immediately obvious to the ENT on the West Coast, demonstrating once again how full of shit they can be. And I'm actually looking into reporting that daycare to the Board of Education given that they missed something that should have been addressed (the use to let her nap until 5 pm, claiming they were not allowed to wake children up and ignoring something that was glaringly wrong).

Finally, I'm frightened. Because this means surgery number 5 for this child who isn't even 5 years old. Following when the Beats had their ear tubes removed, I assumed we had put all of this behind us. I spoke too soon. And though adenoid and tonsil removal is routine, it's none the less scary to know there's yet another operation.

The summary statement is we're moving forward, with surgery scheduled for May 3. And I'm thankful that we have some way to help She-Beat as this cannot continue. She needs to be able to breathe.

But I dare anyone to argue with me about how superior medical training in Boston is. Or argue in general.


  1. Oh poor She Beat. :-(

    As far as the daycare workers....they are not medical professionals and so I would hesitate to put this on them. Maybe they are bound by state DCFS rules on waking kids up while they are sleeping. Did they alert you that she was sleeping a lot? They I would say that it was on you to have She Beat checked out for a problem- which it sounds like you did and the ENTs in Boston messed up.

    Either way, I'm sorry to hear that SB has to have another surgery, but I'm crossing my fingers that this is the remedy that helps her.

    1. Let’s clarify about the daycare. No, they are not medical professionals, but their role is to REPORT ABNORMAL BEHAVIOR AND CONDITIONS!!! This was a HUGE problem with them as most of their staff had minimal training and was terrible about communication. Every care program before and since (including this last set) TALKED to us about any issues or odd happens. This program didn’t.

      And no, they did not alert me she was sleeping a lot. I noticed she was asleep when I picked her up a couple of times and they argued with me that they weren’t allowed to wake her (which isn’t true according to the board of education). And the ENT here immediately picked up on this as a sign whereas the Boston ENTs ignored it.

      But hey, go Patriots.

  2. Sorry that you are feeling let down. It sucks when those responsible to watch over a tiny vulnerable child don’t do what they are supposed to. I can only imagine how that hurts your heart. Poor she-beat. Hoping that this latest procedure helps her a lot! Sleep is so important so any help there is good news.

  3. Score another point for this life transition. I'm so glad that you finally have a clear diagnosis and treatment that my help SB. It must feel horrible that it was missed by people who shoulda/coulda known better and allowed for help sooner.

  4. Oh Cristy, I am so sorry to hear that She Beat will need surgery, and that you were both so badly let down by the experts. I'm just glad that some answers have been found. I'll be hopeful that this will make a difference for She Beat. You're both in my thoughts!


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