Our Decannulation Story . . . so far - Page 2

[irangel]

Originally Posted by kalkiwendy

Well, she's alive! And kicking. And screaming. And dancing. It's so wonderful.

She had two "crises" in the middle of the night, but she self-recovered, so I'm thinking that's a good thing and won't preclude her from being fully decannulated.

Question: so, she'll have the dressing until the hole closes. Is bathing about to get even more horrible?

Thanks so much for the support, y'all. It's been really wonderful to have y'all through this!

That's so awesome! The night before decannulation dd2 almost coded and had everyone terrified to decannulate but the ENT decided that the trach being in place had little to do with the episode so we went forward.

The hole will close up extremely quickly. We were cautious when bathing her for the first 10 days or so but after that it appeared as though the hole had closed enough that we could bathe her normally. It took about 4mos before I didn't freak about water being on her neck. Her hole did not completely close on it's own and we did end up going in 5mos later and closing the pin sized hole surgically. Here's a look at the days following decannulation.

Immediately after pulling it:
http://i2.photobucket.com/albums/y7/...ngthetrach.jpg

24hrs later:
http://i2.photobucket.com/albums/y7/...24hrslater.jpg

3 days later:
http://i2.photobucket.com/albums/y7/...7/3daysout.jpg

And when she was holding her head normal and not looking up the hole folded over on itself by 3 days out:
http://i2.photobucket.com/albums/y7/...omarelaxed.jpg

[AndVeeGeeMakes3]

THANKS, Emily!! That's very helpful.

TRACH's OUT!!!!! It's been about an hour and her only complaint is the pretty sloppy taping job doc did . Sats have held at 97+ since then!!


I only have my laptop camera, but here are a couple of shots of her, not so great quality.

http://i184.photobucket.com/albums/x...dy/Photo67.jpg

http://i184.photobucket.com/albums/x...dy/Photo54.jpg

http://i184.photobucket.com/albums/x...dy/Photo66.jpg

[irangel]

Awwwww! She looks so happy! My daughter would have freaked out with that bandage too. Our ENT just put a bandaid over it and once it stopped oozing we stopped putting bandaids over the hole.

[AndVeeGeeMakes3]

All Done!

We're going home today! Thanks so much for all of the encouragement that y'all have given me through this. It has been so incredible to know that I had y'all thinking, praying, and sending good vibes to Gracie and me!

[angelamclamb]

I am sooo happy for you!!! and her of course. My son has been trached since 2mths old and we will attempt decannulation in March or April. His airway was narrow and floppy at birth and now the only problem is just from having the trach has caused some floppiness. It sounds like your daughter had the same problem. Did she ever tolerate the PMV, my son still can't. He resist the urge and fights it as well as having granulation tissue that was as of 1yr ago was 50% of his airway so I am sure it is more now. I don't think they will be capping him, just taking it out in the OR under sedation to check his airway response and then slowly waking him until he breathes heavier but not enough to make him upset and if that goes well then they will remove it and send him to ICU for 24hrs. If that doesn't work, then the rib graft would be scheduled. We want so badly to hear his voice!!!!

[MotherWhimsey]

That is so awesome!!!!!! I am soooooo glad to hear that it went well and you are going home!!!! WOO HOO!!!

Has she found her voice yet? that would be so cool to watch!

I'm so happy for you guys!!!!

[AndVeeGeeMakes3]

Thanks so much! It's so fun to hear her talking. I know how much you must want to hear your little guy's voice.

Originally Posted by angelamclamb

Did she ever tolerate the PMV, my son still can't. He resist the urge and fights it

She wore the PMV for several months. It was total hell getting her used to it. She would wail and choke and vomit, etc. (It was the most surreal feeling to hear that wail - feeling awful for her and incredibly thrilled to hear that voice!) We worked her up to wearing it all the time over several months. We started off with just a minute or so and then two minutes. I'd cry with her because it looked so awful, but we knew she was getting some air because she was able to make some (very soft) noise over the trach, so I was completely freaking out about her sats dropping all the way. The doctors said that it was pretty unusual that she could push air over it to make some sounds.

She had jaw distraction in September and that really opened up her airway - so there was much more noise at that point.

Anyway, NOW she's REALLY makin' some noise. Beautiful sounds! And, really, best of all, I just washed her hair and the freakout was minimal. No choking, just about three tears. Incredible.

Angela, I hope everything goes well. Keep us posted.

[irangel]

Originally Posted by angelamclamb

Did she ever tolerate the PMV, my son still can't.

I will just comment and say that my dd2 did not tolerate her PMV at all until we downsized her trach. Once we downsized a half-size she could do it for a short period and when we went down a full size she could tolerate it 24/7.