I have a 10 month old little girl, Gracie, she has Prader-Willi Syndrome and was born 3 mos. premature. My question has to do with her trach. Since she is growing and becoming more active she has learned to pull her trach mask off of her trach...then causing her o2 levels to drop...has anyone had this concern and if so how do you try to correct it or prevent it??

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Roxanne - posted on 02/26/2009

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Thanks so much...I spoke with her resp. therapist today and he suggested just tightening the mask then knotting off the elastic to prevent it from being pulled out more...but he laughed and said there is no magic solution!  lol

Anna - posted on 02/26/2009

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Trach babies can get their trach. masks pulled off quickly... I'd definitely keep the pulse ox. charged and going. It'll help you keep your sweetpea safe. Just consider it a lesson learned...so glad she is ok!

Roxanne - posted on 02/26/2009

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She is on a pulse-ox monitor...but ther battery dies early in the evening and this was about 1/2 hour before she was going to get ready for bed...so I thought I really didn't need the monitor since she was playing under her playmat...but she got so excited and started pulling her mask off...well I corrected it but the last time I didn't and she was just lying there...breathing slowly, but breathing....I've learned my lesson and keep her monitor plugged in all day long....I know I just need to be even more diligent in keeping my eye on her...now if I'm in the kitchen cooking she is with me in her highchair, etc...

Anna - posted on 02/25/2009

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I'm a pediatric RN, and I used to work with trach. babies daily. It was always a problem for us too! I'm assuming she is on an 02 sat monitor. Do you have alarms set that can alert you when her 02 levels drop? I would just set the alarm where it would alert you that the level is dropping at all- that way you can check on her and correct it before it becomes a dangerous problem. I wish I could help more!

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Agreed, I'm sure doctors that specialize in this area would have a lot of information. They have to deal with these problems with each and every baby born with this syndrome. The best advice is to talk to your doctor or health professional.

[deleted account]

That's a pretty serious question...I'd ask your doctor rather than getting the general public's advice. Not that people wouldn't mean well, but a professional opinion would be the best bet.

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