Extended Trach versus non-extended Trach

[kkwilliams]

This is my first post - so I wanted to introduce myself and most importantly my son. We adopted our son Noah 6 months ago from Orlando at 10 months old. He is a former 24 weeker and has had a trach for most of his life. We live just outside of Cincinnati and flew him up here in September. He then lived in the hospital for the next six weeks in the TCC. During our time at CCH he went from being on a vent 24/7 to only at night. From continuous gtube feeds to exclusively bottle feeding. We have been absolutely amazed at his progress. Two weeks ago we met with his pulmonologist, Dr. Boesch, who took him completely off his vent! This past week they (pulmonary and ENT) did a scope to assess our next steps to becoming trach free.

During the procedure, they downsized his trach from a 4.5 to a 4.0 and went from an extended trach to a non-extended trach. Our main concern is that the non-extended trach is rubbing his skin raw on his neck and chest. We try to keep mepilex on it but he loves pulling it off. Is there an advantage to using a non-extended trach? Right now I don't see the upside of it and we are considering calling on Monday to ask to be switched back to an extended.

Thanks for your help,

The Williams
Mother and Father to 7 children including our latest addition Noah.

[SammyJo]

Congrats on Noah's progress, really amazing! I can't speak to many advantages, but I did think as Sam got older we would want her on a non-flextend trach. One advantage I can think of is that there is less length for Noah to pull. Sam is still on a flextend at 13 months and should get decanned next month, so she should never have to wear any other type. At this point, Sam is a tease and thinks it is funny to pull on the cap and the trach. We have only had an accidental decann once (sure she'll do it today :) ), but she definitely scares us with her pulls and ornery smiles. Regardless, I have been happy with the flextend, like you said, very little irritation. I wish little Noah continued success!

[Sweet Harrison's mommy]

Congrats on all of the progress your little guy is making! That is fantastic:)

In regards to the trach question...we were advised to do the same thing on our road towards decan, so we switched my son from a 3.5 Bivona flex (which we LOVED when he was vented) to a 3.5 Ped Bivona. Not really sure that it made much of a difference, but our docs seem to think that the "elephant trunk trachs" (as they like to call flex's. haha!) have a bigger inner diameter than your standard trachs. That theory is up in the air to me, but that is what they told us. Harrison handled the switch just fine, and actually he pulls at his trach much less since before the switch, but in your case, if the irritation doesn't decrease, I would also fight to switch him back to what works for him.

Hope this helps! Good luck on your road towards decannulation and keep us posted:)

[kadiera]

The big thing we see is "dead space" - the amount of air you have to move through the trach with each breath that isn't actual clean fresh air. The flextend trachs have more dead space, and I know for Bethany it makes a difference in how much time off the vent she tolerates.

Beyond that, I really think it's a hospital preference thing. Alexander's vent team liked Shileys, Bethany's vent team likes the Bivona Flextend. Bethany's skin wouldn't tolerate the silicone of the Bivona, though, so she's back in a Shiley.

As kids grow, their necks lengthen and it makes for less rubbing. Now that your son is off the vent, is he using an HME or a mist collar or speaking valve or....? We use gauze under the trach to help with skin issues (and Bethany is crazy sensitive to everything). Positioning to help with airflow has been a big help too.

[kkwilliams]

Now that he is off vent he is using an HME at night and a Passy-Muir valve during the day. We have cool mist collar if he needs it, but so far his secretion have remained thin, so we haven't used it.

Thank you everyone for your input and well wishes. We're going to contact the doctor today about the irritation, it really seems to be bothering him and we can't keep anything on it.

[Christamae]

I would suggest a non-extended Bivona trach. They are much more comfortable than Shiley and mold to your trach. Like in my case I have a deviated trachea.

[kkwilliams]

Right now he's on an Arcadia 4.0, is there much difference between the Bivona and Arcadia?

[tbhartman]

Have you tried duoderm where it's rubbing? Might stay longer and protect him. Also, do you have the t-shape HME, not the barrell one? May help... They don't have them at the hospital in Cincy, but they do exist! Portex Thermovent T HME's.. it would depend where it's rubbing, but that's a thought.

[kkwilliams]

We do have the T HME's, unfortunately its the trach itself that is rubbing just below his chin raw. We do use Aquaderm and try to keep mepilex on it, but he doesn't allow anything to stay there very long.

[principe]

You can try a bandaid under his chin. Only problem I found is that the bandaid falls off but if you get one that stays it will protect his chin.