Friday, July 10, 2015

Sleep Study Results!

Well, not totally true.  I don't have all the results.  But, I know the most important part.  This is what her ENT said in an email to me:

"Indeed it looked very good.  She did not have any observable sleep apnea!"


Almost makes me remember the night of pure torture, fondly.  Well, it was certainly worth it, that's for sure!!!

So, where does that leave us?

He said, "What we should do is schedule a direct laryngoscopy under anesthesia, to make sure there are no surprises.  Then we admit her to the PICU for decannulation and observation."

I'm sorry, did he say decannulation?!


Of course, we had to wait another two full days till we heard from them with a date for this laryngoscopy.  Seriously, I am going to run out of patience one day... even I don't know how I live like this!

So, I was sitting in Midas on Wednesday, getting the tires rotated and oil changed in my car, when I got a text from Brandy, "His office called with possible dates.  Call me!!"

I got their number from Brandy and called his office back immediately.  She gave me three dates, and I took the first available, Tuesday, August 11, 2015.

After going over everything, she confirmed by saying, "So, Harlie is scheduled for a direct laryngoscopy and decannulation with an admittance to the PICU on Tuesday, August 11th.  A nurse will call you on the Friday before to give you more information."

I could barely say, thank you and good-bye before I was full-on crying tears of joy!  And I'm not even embarrassed.  I think the guy sitting next to me was a little worried.  But, I didn't care!

After all we've put her through!!  After almost NINE years of breathing through a tube!!  We are scheduled for DECANNULATION!!!

I just can't believe it.

So, we have one more hurdle to clear - the laryngoscopy.  As long as there are "no surprises", we'll be home free.

I'm choosing to think positively.  I'm going to enjoy the fact that we are HERE.  So, so close.  Closer than we've ever been.  And considering the report showed NO observable sleep apnea, I'm thinking that's a really good sign.  The only thing that nags me is that one day, a while ago, her ENT said that she had large tonsils and adenoids, and that they may/may not have to come out.  I'm guessing that since she slept okay, maybe that's not an issue.  I guess we'll see.

More waiting... but we are oh-so-close.  And that's so freaking exciting!!!

From a critical airway to possible decannulation in just under nine years.  With over 45 surgeries in between.  I don't know how we've all survived.  I really don't.

Our sweet, sweet girl.

Her airway was so critical, that she could barely be moved for the first three weeks of her life.  No holding her, no cuddling, no comforting her.  Even before and after her first heart surgery, she just had to lay there.

So, I sat there, next to her, as much as I could.  I would touch her toes and stare at her.  And wonder what the hell was happening.  Still wonder that, sometimes.  ;-)

Three days old, the day before her 1st heart surgery.

This just proves how tough you can be, when you need to.  We've really put her through a living hell, and you know what?  She's still a very happy little girl, who still loves us very much.  Kids are stronger and so much more capable than people realize.

Thank God for that.  

And thank YOU for being there for us.  

One more month.... I. can't. believe. it.  

Much love,
Christy xo


Betsy Hart said...

That is just amazing. I am sitting her at my desk nearly crying!

Anonymous said...

You put her through nothing. You supported her and loved her while life put her trough trials. Harlie is indeed very strong, but if it wasn't for you she wouldn't be. Don't be alarmed when she grows up to be the beautiful person you raised.