Today's question comes from Heather...a very dear friend of mine. She asked, "Does Clover still sleep with oxygen or does she use a mask for sleep apnea?"
Clover still sleeps with oxygen. Her latest sleep study (back in March) still showed
obstructive sleep apnea, which is common in people with PWS. Her apnea
has improved though, so that is good news! She is now down to only 8
apnea episodes an hour (from 16 an hour last October).
It's
really not a fun thing to have your child have sleep apnea. I can
literally see Clover stop breathing while she is sleeping. It can be
disturbing to watch! Luckily, we have a pulse ox machine that we hook
Clover up to each night. This monitors his oxygen levels and heartrate.
So, if she desats in the night (meaning her oxygen levels get too
low), an alarm sounds. This gives me so much peace of mind at
night....it's just nice to know that if anything were to happen with her
in the night, the alarm would wake me up.
One thing you
might not realize about having a child on oxygen at night is that they
do NOT like to keep the nasal cannula in their nose....so they are
pulling it out all night long. So....what happens when Clover pulls out
her oxygen? She usually desats, then the alarm goes off, then I know
she's pulled her oxygen off. Some nights she will do great and leave it
on all night!! Other nights she pulls it off every hour....those are
very long nights!
I'm not sure how much longer Clover will
need to wear oxygen at night. It's possible that in the future, the
doctors will switch her to a bi-pap mask. Only time will tell I guess.
I'm hoping that she continues to get stronger and that her sleep apnea
goes away!!
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