You Want to Do WHAT?

When Monday came and we were able to talk to Audrey's ENT (ear - nose - throat) doctor, Dr. Stuart Morgenstein, he said that would be able to place the feeding tube Wednesday. Ugh.  We didn't plan to be here that long.  He also dropped another surprise - they wanted Audrey to have a trach (a whole in her neck to help her breathe).  They wanted to give her a trach so they could treat her more aggressively and so they wouldn't have to worry about compromising her airway.  Then they dropped another surprise - they also wanted to do surgery on her tongue and remove part of it.  I did mention I was all by myself, right?  I went from an appointment where I planned to be at Riley for one night and have two tests done to having a feeding tube and trach placed and having part of my daughter's tongue removed.  Scared doesn't begin to describe it.

We ended up waiting about a week to have the actual surgery.  By then Dan came to be with me and my mom, Dan's dad and stepmom came to be with us for Audrey's surgery.  That was the longest day of my life.  After surgery Audrey would have to spend time in the ICU until they felt she was stable and ready to go back to a regular room.  We were in this for the long hall - we were going to be at the hospital for at least a couple of weeks.  I missed my girls at home and really wanted the whole situation to be over.

When Audrey came out of surgery I guess I expected her to be in a little pain, but I also kind of expected her to be all better, fixed, and done with this whole situation.  Wow, was I wrong.  If anything, she looked WORSE after surgery.  Her tongue didn't look better - it was a mess (they removed about 15% of it).  It was still covered in blisters, still had scabs, still bled, now it had stitches - it STILL hung out of her mouth.  I hated hearing everyone say she looked so much better.  It felt like they were just saying it to make me feel better - it didn't make me feel better.  Looking back, it did look better.  I just couldn't see it then.  On top of all that she had tubes hanging off of her and two new holes - her trach - that scared me to death and first (come on, my baby had a hole in her neck) and her feeding tube.  While originally that's what I was scared about - it didn't seem like such a big deal anymore.

One thing I wished I would have been prepared for was knowing that Audrey wouldn't be able to make any sounds when she had her trach.  When she woke up from surgery I learned she couldn't make noise.  I couldn't hear my baby cry.  This was devastating.  How could I help her?  How would I know if she needed me?  How would I know she was awake at night?  Later I learned she would be on monitors when she slept that would alarm me at let me know when she was crying.  This took some time getting used to.  We had sleepless nights for awhile until we learned to trust the monitors. 

This was also hard to deal with because this was about the time Audrey should have been learning to talk.  We decided to teach her some sign language so we could communicate with her.  We taught her signs like; more, eat, mom, dad, please, thank-you, beautiful, etc.  This was also difficult because Audrey had the BEST belly laugh - I wouldn't get to hear that for a while.  That was heartbreaking.


Audrey in ICU after surgey