Tuesday, October 1, 2013

The Passy Muir (speaking valve)

Kayli and I went to her ENT dr's appt this morning without a nurse.  Niko (Kayli's brother) was late to school, and I had to pull over several times while driving, to suction Kayli, but WE MADE IT there and back!!! And the end result is worth all the challenges we had today!!! Kayli is now officially allowed to be on the Passy Muir all day (while awake and as tolerated), without oxygen! She will continue to be on the oxygen as needed, as well as when sleeping,but this is a wonderful step in the right direction!! Kayli's scope revealed larger tonsils and a minimally collapsing upper airway (mild Tracheomalacia), so decannulating (taking her trach out) is not an option that any of us are comfortable with doing at this point. We feel that although Kayli may be able to function without the trach, it would put her at higher risks, and make her life a lot harder when she is sick or having an operation. For now, Kayli has again surpassed all expectations!! One of our new goals for her is to be more consistent with swallowing (a reflex she lost completely during her anoxia/32 minutes of death). She has already relearned the swallowing reflex, but we are now going to push forward and try to help her be more consistent, with therapies. Swallowing could lead to 1. secretion control 2. eating 3. more control with her upper airway 4. talking 5. possibly hearing The ENT dr would like to do a scope while under sedation, but this would be an informative test, so we will wait until Kayli has another procedure, then will piggy back it. The ENT said that in time we may want to cap Kayli (put a cap on the trach, blocking the trach air exchange), but the Passy Muir will work with helping regain control, and teach Kayli how to strengthen her tone and vocal chords, so we put off the capping process for now. Overall, it was an informative, progressive, and encouraging appointment, while setting new goals for Kayli!

The purple circular thing on her trach (inside the neck brace) is her Passy Muir Valve

1 comment:

  1. I am so thrilled by how well Kayli is doing! I love all the possibilities for her in the future. We, too, always piggyback those sedated procedures. Love the pic, BTW. She's an absolute doll.