Posted by Adrienne
on 8/27/2009, 7:32 am, in reply to "2 year old passed away"
4.225.146.189
Hi, I am so sorry for your loss. I can not imagine the grief you all have been going through. My prayers are with you. I have seen this message a while ago and called my pulmonologist and ent. My daughter has pierre robin and severe obstructive sleep apnea it sort of sounds like just what your grandaughter had. My daughter's desats are as low as 52%. She had oxygen on until she was one then without any changes to the sleep study they discontinued it. So it has been 3 months without anything helping her apnea. We were suppose to have her tonsil and adenoids removed with a bronch this Friday but they pushed it off until next month. Due to a scheduling conflict. I then asked if it was as severe as they say it is because there is nothing being done. They said its not an emergency but it is alarming. I am very scared after reading this and I was wondering if you had any suggestions. Thanks
--Previous Message--
: I haven't posted in a while, but my precious
: Grandduughter, Cassidy passed away on
: 4/6/09. Besides PRS, she had severe
: obstructive sleep apnea. If any of you
: parents have a child with sleep apnea please
: make the doctor's do something about it.
: Cassidy would not keep on the cpap mask. She
: took it off all night long. No matter how
: many times we put it on, when we went to
: sleep it was off again. God Bless all of
: you. We miss our angel sooooo much.
:
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