Friday, August 10, 2018

One year...

It has been one year today.

Last year on this day, we watched Harlie struggle to breathe, all day.  

It was agonizing. I sat there, trying to remain calm, telling myself that she was going to improve, and that she was in good hands at Boston Children's Hospital. 

I remember how hopeful we were when we walked our smiling, sweet voiced talking and laughing little girl into that hospital on the 8th of August. 

I fully believed that this surgery was going to make her life better. Who can, or should, live with their jaw fused, not allowing them to open or close their mouth? And she wanted to learn to eat food - by mouth! And if she was talking that well with her jaw fused, imagine how much better she could talk if she could open her mouth! 

So, it was an easy decision, and not one I doubted at all that day, or any of the days in the six months leading up to that day.

I don't even doubt it today. I just wish I had realized how critical her airway was and gotten her ENT involved way before we sent her into the OR that day.  If only...

At any rate, the 10th of August was awful, and that's putting it mildly. Tom had already gone home, and Maggie, my niece, was with me. After we had gone back to the hotel that night, my cell phone rang. I have never been called back to the hospital like that. I think all I said to Maggie was "Uber." 

Anyway, they had the consent form ready for me to sign when I got there eight minutes later. Dr. Mancuso was amazing. He was going to try to intubate her bedside, but decided that was too risky. 

They were in the OR way longer than they told me they would be. It was almost midnight. I was so afraid that she had died, that when he told me they had to give her an emergency tracheosotmy, I was relieved. Just minutes shy of her two year "decanniversary" (she got her trach out on August 11, 2015) she was trached again. But, one nightmare just morphed into another. 

Here are my posts from back then:

I don't want to rewrite them, nor relive them if I don't have to. I think I want people to know that for the past year, I have had these "apps" running in my background, all the time, draining my battery. 

I am sad. All the time. I just bury it at different depths depending on how much energy I have at the time. 

I am tired. Not the kind of tired that goes away with a couple of good night's sleep. The kind of tired that makes you daydream of going somewhere far away, all by yourself, just to sit and watch the sky change colors. 

I have tried to notice and remember every detail of her breathing for clues. Clues for me to give her doctors so they can figure out why she still can't tolerate a speaking valve. Or why she can't walk around the house without getting so out of breath. I never stop thinking about it. 

A year has gone by with virtually no improvement. The only thing that is better is that we are able to do trach changes. And, if I'm being honest, I haven't done one in months. Her nurses have done them. I did them for nine plus years. And now the thought of doing one makes me cringe.

But this girl still manages to be happy, at least on the outside. I know she hates the trach and all that comes with having it. But she still smiles. And makes jokes. 

Harlie with Mabel. 
And this girl keeps us going. She is stronger than us. 

And we are full of love for her, and each other. So somehow we keep on keeping on. I just don't want you to think it is as easy as we might make it look sometimes. It is hard work, all the time.

We couldn't do it without you and your amazing support. Thank you for loving our sweet Harlie and the rest of us.

Much love,
Christy xo

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