Lily's Mom
04-23-2002, 02:13 PM
Hi Stacy,
Welcome to the board! My daughter Lily is 11 months old, also with Pierre-Robin, and got her trach when she was 4 weeks old. We tried decannulation last month but had to put her trach back in after 4 days because she was still having obstruction while she was asleep. When we had her capped at home she was fine, but she was always awake. The one or 2 times I let her sleep capped, she started to snore after a little while, then started making louder obstructive-type noises, just like she did before she got her trach. I hope that's not the "congested" sounds you are talking about.
In Lily's case, her sats were great during her sleep study even though she was obstructing all night (snoring, snorting, gurgling, etc.). Because the numbers looked good they decannulated her, despite my worries about the obstruction. (Hey, I don't know anything, I'm only the crazy mother) After a few days of not sleeping, not breathing well while asleep, etc. she pooped out and started having obstructive apneic spells and dropping her sats into the 70s. That's when we pushed them to put the trach back in. It was a very miserable 4 days and so hard to watch her struggle when that's why we put the trach in to begin with.
If it's just congestion you're hearing, I think she will be able to learn to manage it herself pretty quickly without the trach. When Lily had the trach out for 4 days, she would occasionally sound gurgly but would eventually cough or swallow to clear her secretions. It just took some practice I think!
I hope everything goes really well! If I can help with anything please email me!
http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/smile.gif
Erica (Lily's Mom)
Welcome to the board! My daughter Lily is 11 months old, also with Pierre-Robin, and got her trach when she was 4 weeks old. We tried decannulation last month but had to put her trach back in after 4 days because she was still having obstruction while she was asleep. When we had her capped at home she was fine, but she was always awake. The one or 2 times I let her sleep capped, she started to snore after a little while, then started making louder obstructive-type noises, just like she did before she got her trach. I hope that's not the "congested" sounds you are talking about.
In Lily's case, her sats were great during her sleep study even though she was obstructing all night (snoring, snorting, gurgling, etc.). Because the numbers looked good they decannulated her, despite my worries about the obstruction. (Hey, I don't know anything, I'm only the crazy mother) After a few days of not sleeping, not breathing well while asleep, etc. she pooped out and started having obstructive apneic spells and dropping her sats into the 70s. That's when we pushed them to put the trach back in. It was a very miserable 4 days and so hard to watch her struggle when that's why we put the trach in to begin with.
If it's just congestion you're hearing, I think she will be able to learn to manage it herself pretty quickly without the trach. When Lily had the trach out for 4 days, she would occasionally sound gurgly but would eventually cough or swallow to clear her secretions. It just took some practice I think!
I hope everything goes really well! If I can help with anything please email me!
http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/smile.gif
Erica (Lily's Mom)