Decannulation
27 July 2008 - 4:12pm — gurneysam
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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Comments
Nevaeh Decannulation
Thanks to those who responded to my question in July. I have been so busy that I have not had a chance to update the blog. Nevaeh had her Sleep study and we got a call yesterday from the doctor saying the preliminary results look very good. We now have to wait to talk with the ENT and see what happens after that. From the sound of things, it looks good:) We are hoping the trach will be gone before the end of the year. Hopefully, it will be nice to have it out before her birthday in September.
Michelle
Nevaeh's mother
Flashback!
My son has PRS and was thought to have Stickler's at one time. He only had his trach for 11 months, and was able to be decannulated. He started pulling the trach out at night in his sleep, and was having no trouble with the obstruction, which was the reason for the trach to begin with. He was just over one year old at decannulation. Good luck!
Decannulation
Thanks for your words of encouragement.
Hi. There are several
Hi.
There are several childern with PRS (and one that I know of with PRS and Stickler) - check out the message boards on tracheostomy.com. There is more traffic there.
You can get there from the message boards link above.
Take care.
Claudia