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View Full Version : Very import bronch coming up, crossed fingers please!!!!!!


ericnrosesmom
04-18-2009, 12:43 AM
As many of you may know, Eric's sleep study last month didn't go as expected. His previous one last November showed that he was borderline to be able to sleep without the vent (he's been off it while awake since last summer). The study in March had resp rates between 40 and 60, mostly in the 50's. Also a bunch of apneas, I forget how many. Anyway the pulmo thinks he likely has scar tissue or some form of malacia and decided to do a bronch. If they do see something, then we start deciding how to go about fixing it. However, I asked her what would happen if they didn't see anything out of the ordinary. Her response was "if there's no blockage then the problem is neurological, and nothing can really be done about it." Which as I understand it means he'll always have to sleep with a vent, which in turn means he'll never get rid of the trach. At the time he got the trach (a year ago last September) consensus was he'd most likely be rid of it by age 3 or
4. I'm trying really hard not to borrow trouble. I think, and most ouf our home nurses agree, that the vast difference between the Nov. and March sleep studies means that most likely the blockage developed during that time. If there is a blockage and if it can be removed, I'm hoping we can start weaning off the vent at night and maybe within the next 6-12 months get rid of the trach. I never thought I'd be in the position where I'd actually WANT my son to have a blocked airway, but in this case it's actually better lol. Please pray for a simple problem that can be easily fixed and lead to eventual decan, not a permanent trach.

kirafaesmom
04-18-2009, 12:59 AM
Believe me, I understand completely. I don't know how many times I've prayed that the docs would find SOMETHING that we could actually do something about. In our case, we will always have the trach, and are waiting for the sleep study to determine if there's anything we can do, or if it's "simply" Kira's brain. I'm praying that in Eric's case, they find clear evidence of something to FIX! How long do you have to wait (stew) until the bronch?

ericnrosesmom
04-18-2009, 01:02 AM
It's Wednesday. Just realized I forgot to mention that before.

debvec
04-18-2009, 07:29 AM
I pray for a nice, easy to remove, something or other that is blocking the airway just a tiny bit to make all things wonderful once it is gone....sometimes it is bad when we ask those questions...

JWorthington
04-18-2009, 09:49 AM
Good luck! Hope they find something that's easily fixable!

Julie x

Hope
04-18-2009, 10:21 AM
Prayers here too for somethng fixable!
Hope

alizesmom
04-18-2009, 10:48 AM
Praying. Karen

Ainsley's Mom
04-18-2009, 02:48 PM
Not sure when that bronch is coming up. Hopefully soon. Until then I hope you're able to keep it off your mind and that they find it is something that can be treated. :hug:

Kaylie
04-18-2009, 08:35 PM
Best of luck, i sure hope that things go your way.. we will be thinking of you all.....

lynn
04-18-2009, 10:48 PM
Hope your news is good old scar tissue ! (that can be easily and permanently removed!)

Myself
04-19-2009, 07:57 PM
My thoughts and prayers are with you, fingers crossed for something fixable.
:hug: :hug:
Lisa

Niff
04-19-2009, 09:41 PM
Big :hug: and I hope they find some sort of explanation!

saywhatyouwill
04-20-2009, 11:02 AM
when is it scheduled?
lots and lots of the best luck.