I know what I know, it's what I don't know.

This article says so many things I've thought, felt and wanted to say.  It expresses my worry every time we see her cardiologist, every time we have a surgery, every time she gets sick.  The scariest thing about CHD, the unknown.  I know what I know, it's that next thing to come that worries me, frightens me and scare me...for the rest of her life.

WHY FIGHTING CONGENITAL HEART DISEASE MATTERS

written by Lexi Behrndt February 5, 2015 

It's done and gone!

Everything went well yesterday.  Lydia went into surgery, had her right ear tube replaced, the bronch looked great and there was no tissue to remove in her trachea.  Things went so well, in fact, her trach was removed in the recovery room and it was long gone when we met her afterward.  She's had some cranky moments that could be due to the ear tube, breathing differently or just being away from home.  All in all she's done great and we are so proud of her!  

Today is the day we say goodbye to the "3.0 Peds Bivona uncuffed trach."

Our sweet girl is joining the Naked Neck Club!  

Lydia is spending 3 or 4 days in the hospital this week for several things. 

1. Surgery to do a bronchscopy. 
2. Procedure to remove granulation tissue inside the trachea. 
3. Check to make sure her ear tubes are in place and replace if necessary.  
4. Decannulation after the she wakes up from surgery. 
5. Remaining for 24 to 48 hours of observation.

I'll try to post an update tonight after Lydia's asleep and then again tomorrow as we check things off our list.

Here is a good overview of the process Lydia will go through for decannulation.

http://www.chop.edu/treatments/tracheostomy-and-decannulation