gurneysam

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17 weeks 4 days

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Decannulation

 
Hello all,
 
I am new to the list.  I have a 4 year old daughter who was born with Stickler Syndrome and PRS.  She has been decannulated before but had to have her trach put back in due to severe sleep apnea. The sleep apnea is likely due to an obstruction caused by PRS (Pierre Robin Sequence).  She is scheduled for another sleep study in August.  We are praying that the obstruction causing the sleep apnea has subsided (her jaw has grown in) and she will be able to have her trach taken out. 
 
Have others had this issue before?  How long does it usually take a child with a trach to have it taken out?
 
If there are others with suggestions and/or comments, I would love to hear them.

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Decannulation gurneysam412 weeks 1 day ago

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Decannulation

 
Hello all,
 
I am new to the list.  I have a 4 year old daughter who was born with Stickler Syndrome and PRS.  She has been decannulated before but had to have her trach put back in due to severe sleep apnea. The sleep apnea is likely due to an obstruction caused by PRS (Pierre Robin Sequence).  She is scheduled for another sleep study in August.  We are praying that the obstruction causing the sleep apnea has subsided (her jaw has grown in) and she will be able to have her trach taken out. 
 
Have others had this issue before?  How long does it usually take a child with a trach to have it taken out?
 
If there are others with suggestions and/or comments, I would love to hear them.