Subglottic Edema / Large Tongue

[Momi2AntnJadyn]

I was just wondering if any of you have had your child trached for either of these reasons. When Jadyn was trached, they thought it was from her trachea being really swollen from being intubated, because she was fine on just CPAP for so long, and she was fine if the vent disconnected, just breathing through the tube, but as soon as she was extubated, she'd not be able to breathe and she'd have retractions and turn blue. When a bronchoscopy was done, all they found was a lot of swelling, but nothing structurally abnormal. They put her on steroids for a couple days (to make the swelling go down), and tried extubation again, but the same thing happened, so she was trached. The ENT told me that the only real way to give her throat a "rest" was to trach her. When she was extubated, she was fine for a couple of seconds on her stomach, she even let out a little cry (which I'd never heard EVER out of her ), but as soon as she was put on her back she couldn't breathe. She has a very large tongue, but the ENT said it wasn't particularly thick, just really long. The genetecist is always talking about her "large tongue" though, and saying it might be what was blocking her airway. Anyway, the reason I'm writing this is because they're going to do another bronchoscopy sometime next week and see if she still needs the trach. I don't understand this, because he didn't see anything the last 2 times this was done, so I don't know what he'd see differently this time, but that's what they're going to do. And they want to see if she might be able to get the trach out. My feeling is that she needs it, but her doctor (pulmonologist) seems to think she doesn't. I don't know. It kind of scares me if she were able to get it out, that it wouldn't be as easy to bag her, or hook her to a vent if necessary, when she has her neurological issues. But on the other hand, it'd be one less thing to deal with, I don't know. I just think it's her tongue blocking her airway, that's just my feeling. I was just wondering what you guys thought, if any of you have had experience with tracheostomies for either of these reasons. Thanks

Amanda, My son Sean continues to need his trach due to his tongue falling back over his airway. His tongue is not large, but his jaw sits back about an eighth of an inch. The ENT didn't find this until he was 15 months old. When he was having his bronch, everything with his airway was ready for the LTP surgery so the ENT took a scope up his nose to check there and found the tongue issue. We now have to wait to see if he will grow out of this. You might want to ask if this is a procedure they might do to verify about the tongue issue. I hope this helps Take care, Kim

[Momi2AntnJadyn]

What exactly is malacia and how do they find out whether or not they have it?