Passy muir valve

[Shari]

Jen-
Glad to hear from you. Remember me? My little one has the complex CHD, too. Jacob's exactly one year older than you little boy and he's had a lot of trouble with the PMV. This week, he learned to plug his trach with his finger and he's making all kinds of sounds! We're so excited! Some of them just have a lot of trouble. When we put it on Jacob, he coughs so hard it shoots it across the room (he hit the ENT in the head with it once! http://www.tracheostomy.com/iB_html/non-cgi/emoticons/biggrin.gif ).
-Shari

[christyw]

For the first several months gaithy didn't quite tolerate her pmv. She would cough ferociously, get very red, blow the valve across the room - and the coughing/gagging and redness were so terrible that we gave it a rest. Several weeks later after she had made progress in a lot of developmental things and we wondered if she might be better able to understand that she could talk with it on. We tried it on a Saturday night with success. She wouldn't stop talking! So, after 30 mintues I took it off of her because she wasn't giving herself any rest!! Thru that next week we worked up to full time pmv and haven't looked back since. It's all about when the child is ready - I really didn't know if Gaithy would EVER tolerate it, but suddenly she did. One big thing we did was really work to get her talking and babbling as soon as the valve was placed on. We would try ANYTHING to keep her attention and make her laugh - so she would hear it and see that it was ok to breathe like that! That helped a little all along, but it wasn't until that Sat. night that she wore it without coughing a lot.

christy