March 24, 2015

sleep study results #4

   I got a call today on Sadie's sleep study test results.  The good news:   She is on the right amount of oxygen at night to keep her oxygen saturation from dropping.  She is going to continue to wear 0.5L of O2 via nasal cannula. This way her organs and cells are getting the proper amount of oxygen they need to stay healthy.  The bad news:  Even though Sadie sleeps between 10-14 hrs every night, she really isn't sleeping. Her apnea is so bad that she is constantly waking herself up to take a breath.  Which means she is never really going into that deep REM sleep that you need to fully feel rested. 
   The tech that called me to give the results was a little clueless. No offence to her, but since she really didn't know what we were looking for and about these episodes, she really couldn't answer my questions very well.  She told me "yep, Sadie has central apnea still and 0.5L of 02 will work great for her and keep her oxygen from dropping when she sleeps" (Well great lady, but that's not really the reason that we had this test done). I explained about these episodes and we were trying to see how much sleep she was actually getting a night.  Silence...
   Finally she starts reading the results to me.  In the 10 hrs of total sleep that Sadie had that night only 64 min was the REM sleep. To me that sounds terrible. So I ask "how many min of REM sleep does a toddler need"? She can't answer that question.  "Could the lack of sleep cause such a long periods of time where she could be so unresponsive"? Again, no answer.  I said "where does she fall on the sleep scale good, ok, bad, ugly"?  She says "well I'm no expert, but I would say really ugly".  "Great!  So what is our next step"?  "Sadie will just follow up with the sleep Dr in August".  What?! that's 5 months away?!  I said "there is no sooner appt and wait a minute, we have never seen a sleep Dr before". She replied "oh, I'm confused then.  Can you hold"?  (rolling my eyes)  Finally, she got back on the phone and says "They want to you to follow up with a sleep Dr".  "Ok so when can I get her in for an appt"?  "I'll have to call you back, we don't have an appt set up for her". I asked "what is this appt in August that you were talking about".  "That was an appt that you cancelled and rescheduled for last week".  AHHHH!! I was ready to pull my hair out at the end of the conversation.

Image result for images of pulling hair out

   What did I get from this conversation?  My child sleeps like crap, there is nothing that can be done at the moment besides to continue oxygen, and we need to add another specialist to our list of Dr's.  I have a list of questions to ask and no appt to ask them.  Hopefully, they will call me at the beginning of this week with an appt for sometime soon.  My child needs as much good sleep as she can get so she can have energy and a clear mind to work on all these new things that we want her to do.  Oh, and I forgot to ask if we could get an apnea monitor. AHHH! There goes more of my hair.

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