***Ragdoll72** — The Bump
Special Needs

***Ragdoll72**

I posted below but wanted to post under a different thread in the hopes that you'd see this.  May I ask what the underlying problem that your daughter has is?  I ask because there may be some other options depending upon the problem.

My daughter was very close to having a trach placed this winter but we have so far avoided it.  She was born 10 weeks premature and was intubated for her first 24 hours.  This presumably caused scar tissue to form directly under her vocal cords, making treatment for it difficult.  Her airway was 50% restricted (ended up being about 4 mm wide) so we needed to address the problem.  We're in Boston and there are two doctors here and there's another in Cinncinatti that deal with specialized airway treatments.  We ended up doing an experimental, but endoscopic, procedure that worked the second time the procedure was performed.  (We were told that they'd try it three times before ruling it out as a possiblity.)  If that didn't work we were going to go with either a trach or an airway reconstruction, which is a highly specialized and invasive procedure, but would ultimately correct the problem permanently and avoid the care needed for a trach.

If you go with the trach, take comfort in the fact that it's a straight forward procedure with a quick recovery and your little one will likely not be bothered by it one bit.  

Good luck!

Re: ***Ragdoll72**

  • Well as far as we know my DD's airway is not restricted.  The problem is she has been intubated for over 3 months.  She has become very dependent on the vent just because of the length of time she has been intubated.  She has extremely close to being extubated three times now - the last time it was almost time for Cpap trails (where they keep her vented but try her breathing on her own for 15mins and increasing times).  Each time she gets close she has had an infection or some other complication that causes her not to oxygenate well and desat. 

    Her extended stay in the PICU and the medicines she has been on are taking there toll on her brain.  We need to break the cycle she is in.  And the only way is extubation - either by herself (which we hopefully will try) or if she fails that then trach.  We feel like we are on borrowed time.

     Thanks for sharing your story though.  I am amazed at the things that are out there and always file the info away for the future- you never know.

  • Sorry that I wasn't able to help more.  Good luck with everything - you and DD will be in my thoughts.
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