January Update

Hi! I have tried to start this post so many times. But, sometimes, it isn't easy to write.  I'll just try to jump in and tell you what's happening now...

After Harlie's heart cath in mid December, she showed no improvement in her exercise induce intolerance. You might remember that her cardiologist there said we should go back to her airway.

As things are now, she still gets out of breath with little activity (like walking to the bathroom, or going up the stairs, or answering the front door).  We are also having a hard time with trach changes.

We did weekly trach changes for nine years and never had an issue. You pull one out and you quickly put a new one in.  No biggie. I've done them alone more times than I can count.

Except now. I wouldn't dream of trying to do one without someone with me. Her anxiety is terrible, which makes her far from cooperative. And I can't blame her. We are hitting something when we put a new one in and she bleeds. That's gotta hurt.

The trach tube is soft and flexible, so in order to put it in, it has to have a hard plastic insert in it (called an obturator) to guide it in. Once its in, you take the obturator out. If you leave it in, she can't breathe. While doing the trach change, it takes so long that she runs out of air and starts to panic. So, I have to remove the obturator before it is in place to allow her to breathe. That is not the way it is supposed to go.

Anyway, I joke about having PTSD. But there are times when it isn't funny. And when I envisioned doing a trach change, I could see me not being able to get it in and her dying. So, I decided I wouldn't do a trach change that week. Or the next. Or the next. I weighed the risks versus the benefits and decided it just wasn't worth it.

I scheduled an appointment with the local ENT that her DC ENT wanted me to see. And I told her what was going on. So, she did a trach change for me. She still bled, but it went way better than when I do it. And while that makes sense (she's the expert after all) it still feels terrible to know that I'm not able to do it myself. After being able to do it independently for nine years, it isn't easy to accept that I'm not doing it right, or not as well, or whatever. I want to be what Harlie needs me to be. And she needs weekly trach changes. I should be able to do that. I want to be able to do that.

So, for now, we are doing saline breathing treatments several times a day (as often as necessary) to keep her trach free of plugs. And I haven't changed it.

She is scheduled for another scope on February 1st in DC. Her ENT (Dr. Preciado) is going to dilate her stoma and upsize her trach to a 5.0. Hopefully this will take care of her breathing issues. If it doesn't, you might have to pick me up off the floor.  It is so hard to see and hear her be so out of breath after doing so little.  I am also praying that she will be able to talk with this larger trach. It isn't easy for her with a 4.5 trach. I'm definitely worried how it will be after going up in size. But, when faced with choosing between breathing or talking, you don't really have a choice.  I'm trying hard to remain positive.  But, sometimes, I'm pretty angry at what life throws her way and the "decisions" that we have to make as her parents. 

Last week I had Harlie with me in the car when I picked up Cooper after swim practice. We were going to go to my sister's lake house that weekend. So, we were talking about that. We hadn't been since July! Anyway, Harlie asked me if she would be back to normal by summer. I asked her what she meant by normal. Her and Cooper spoke back and forth for a bit and then Cooper said, "She wants to know if she will get the trach out before summer so she can go swimming."

I took a deep breath, told myself to be strong, and said, "No. I'm sorry, Harlie. The trach isn't going to be out by summer." And she started to cry. I decided since she was already crying, I might as well go and tell her the whole truth.

So, I explained that when they gave her the trach to help her breathe, her trachea got damaged. That's why she needs the trach to breathe now, even though she used to be able to breathe without it. I told her we are all so sad for her. And that Dr. Preciado is sad, too, and he is going to try really hard to see if he can fix it. But that is going to take some time, maybe a long time. So, we don't know when it will come out. Her and Cooper were both so sad. It was so hard to have to tell her that. But, I couldn't let her think it was coming out soon, when it isn't.

We got home and I put her in front of me and I told her that we all love her and that none of us are giving up on making things better for her. But, for now, we have to try and accept the trach and find happiness anyway.  We all hugged and cried and she even hugged Cooper, who was so upset for her. Surprisingly, she has seemed okay since. Which is kinda crazy, really. I feel so bad for her. She has such grown up, complicated things to have to try and live with and understand.

Honestly, it is amazing, but she seems so grateful. She tells me she loves me when I'm feeding her. She tells me she loves me when I'm giving her a breathing treatment. And she will tell me at random times throughout the day.

I am trying hard to focus on finding happiness anyway.  I've noticed that I've taken so few photos in the past few months.  I tried to find one to put with this post, and I don't really have one to share. So, I'm going to try and change that.  The fact is that life is hard right now.  And somehow, we have to survive it and find happiness anyway.  Wish me luck!

Thank you for caring and for your unwavering support of us all.  You have no idea how often it helps me get through the days!

Much love,
Christy xo