Monday, August 10, 2015

Have we done Harlie's LAST trach change????

Hi! I just want to post a quick one before our BIG day tomorrow!

First, I just want to say thank you, from the bottom of my heart to all of you who get what a huge big deal this is to Harlie, and to us.  I am always amazed and shocked at the crazy amount of love and support we receive from you before, during and after all of our big deals.  We are truly lucky people to be surrounded by all of you.  I will never be able to thank you enough...


It's so overwhelming!  I want to be SO excited.  And, I am!  But, this isn't our first rodeo, and we know first hand that things can go awry and that Harlie has never, and will never be, a textbook case.  Her ENT can go in there tomorrow and find something that's been there all along, but we never knew because of the trach.  And we could leave devastated.  It goes without saying that we hope that isn't the case.  duh.  But, that fear - and the instinct to protect ourselves - is there.  And that's what keeps us from being able to just focus on our excitement.

Plus, even though this is a day we have dreamed about for just shy of nine incredibly arduous years, I don't know what to do now that it could be here (well, tomorrow).  It's so hard to explain.

But, in the past, when I thought about it, it hurt because it just couldn't be.  So, I had to stop thinking about it.  I had to put it out of my mind and focus on enjoying life the way it was. But, now it's happening (or could be, see how hard this is?) and I've never thought past this moment.  I have no idea what it will be like.  What will she look like without that trach around her neck?  I've never seen her without it.  Except when she had heart surgery and they had to take it out because of infection risks.  But, she was completely OUT and she had A LOT going on, so it wasn't anything to enjoy.  Will her voice sound different?  Will she be okay?

The other day Harlie said she wanted to go camping.  I explained that we are going in the fall, that it's too hot now.  I went to the calendar to show her when we're going and she exclaimed, "Oh, that's too long!" So, she said she wanted to go "short" meaning sooner.  So, she picked a day and drew a tent on it (the 4th).  It was then that it occurred to me I had not even wrote her big day on the calendar.  I just circled it.

Crazy emotions, right?

Soon after we brought Harlie home for the first time, I found a support group on line for parents of trached kids (the Trach Board).  And after kids were decannulated (had the trach removed) parents would post a picture with something like, "Meet the newest member of the naked neck club!"

I can't believe after almost nine years of hearing the term "naked neck" that I could be saying those words.  Like, tomorrow.  Holy crap!

It's so surreal.

Good luck, my sweet Harlie Caroline.  If you enjoy life this much with the trach, I can only imagine how much you'll enjoy life without it.

God love her!

Well, I have to go now.  We have to get up early tomorrow and get on the road to DC.  Check in time is 9:30am and OR time is 11:30am.

Thank you again for all the love and support!  I'll be sure to keep you posted!

Much love,
Christy xo

No comments:

Hardware Removal Day

I'll talk about pre-op day first, then I'll blog about today... Yesterday we did the whole drive through testing thing.  That wa...