reconstructive surgery/decann at the same time?

FightingForFaith · #1 03-27-2009, 06:24 PM

I am sure this type of question has been asked numerous times, so pardon my redundance.

Long story short, Faith had a bronch yesterday and the ENT said her airway is still pretty swollen, but is a candidate for reconstructive surgery (I was out of the room at the time, so I am going off what my DH said, and of course the "man-holes" are significant, so I am not sure what type of surgery would be required) and to my surprise they would decann at the same time.

This is very shocking considering Faith has a 4.0 trach, size 3 airway, is making no sound, has no leak, and has never been capped.

This is all talk and probably won't happen for another year (still on the vent), but I was just curious if this type of thing happens.

Have any of your kiddos had surgery and d/c at the same time? Even when their airways are otherwise compromised?

Thanks for any input,
Jen

KJKK8437 · #2 03-27-2009, 06:30 PM

Alex had a single stage LTP where his airway was grafted and he was decanned at he same time. The area of his trachea that needed to be repaired was too close to the stoma site, and the trach had to be removed in order to put in the graft.

Hope this made sense.

Niff · #3 03-27-2009, 06:52 PM

Sounds entirely possible, but I would think they'd want her on little to no oxygen (especially respiratory support) before decann. Although I do believe there is a mom on here whose son is on a nasal cannula after decan.

FightingForFaith · #4 03-27-2009, 07:01 PM

Quote:

Originally Posted by KJKK8437

Alex had a single stage LTP where his airway was grafted and he was decanned at he same time. The area of his trachea that needed to be repaired was too close to the stoma site, and the trach had to be removed in order to put in the graft.

Hope this made sense.

YES! That's exactly what he said.... Ok so that's what a Single Stage LTP means (I've read that so many times but never really paid attention to the meaning).

I guess this happens all of the time!!!

Niff- Hmmm....I hope not, because I know Faith is going to need O2 for some time! I know Dawn's son (whom I think you are referring to) uses a cannula, and I hope when the time comes, we can too.

suzanne2545 · #5 03-28-2009, 09:00 AM

An a ha moment!! And a good one. Wow - you got great news and didn't even know it. Congratulations. Another single stage LTP decannulation here. We are a little over a week from our one year decanniversary.

drct1245 · #6 03-28-2009, 03:23 PM

WOW Jen... that is GREAT news!! Is faith off the vent yet at night, or do they think that she will need reconstruction before she is off?

Nasal cannulas are no biggie after you have been tied to the vent for so long!

50ft vs 3 is VERY nice! LOL But I am sure you know the feeling during the day. At almost 3, Ayden takes it off when he feels he doesn't need it and will actually go and try and put it on when he does. Actually, right before decan, our pulm said that in her experience, kids that truely need the O2 will wear the nasal cannula and those that don't need it after decan will fight it.

Good luck!! What's the time frame you are looking at, or is that one of the "man holes" in the story??

ColinP · #7 03-29-2009, 09:26 AM

I remember the feeling of being terrified when we went from the wait and see approach to being told that we were going to have a Single Stage LTP. We are now 2 days from our Decanniverary (thanks Suzanne, I like that). It has been the best decision we ever made and just like making the decision to have the trach it has given Colin a new life. Most of us from last year have blogs that followed our LTP's feel free to look at ours.
www.gradyfamilytexas.blogspot.com
Congratulations,
Nicole