Post-Op Day 21

Hi! All has been pretty quiet the past few days. I was feeling very low for a couple of days. But, I am feeling a little better now. I just needed some time to switch gears and figure out a way to make all of this better in my mind.

It has been hard to hear the docs and nurses say that certain things look great. Nothing about any of this is great. We aren't supposed to be here at all.

But, I get where they're coming from. Take her ENT for example. From his perspective, he was handed a mess and he has done the best he could. Then more things (out of our control) went wrong. He again, did the best he could and had to take a very unstable airway and make it stable. He had to take a gaping wound and make it close.

It turns out that because of how the wound looked on the outside, they all fully expected for the cartilage graft to be equally bad. They were all very pleasantly surprised that the graft was doing well. If the graft was as bad as the outside, this whole thing would've been for nothing and he wouldve had to start over.

So, now I get it. That graft looks great. The outside, not so much. But, this is better than the other way around. In time, I'm guessing we might be able to improve the outside.

The bottom line is that it really doesn't matter how much I like or dislike how things stand. There's nothing I can do to change it - for now.  I have to be patient and let them trouble shoot and figure things out. And when they are "done" I need to feel comfortable that I can manage her airway safely at home. So, we will cross that bridge when we get there.

In the meantime, I hope that when all of this is said and done that she will be okay, with no permanent side effects/damage (like to her eyes, or her trachea). And I hope that she can talk. If she can talk, and we can hear her voice again, we would be so happy. We have so missed her sweet voice!

And she is making some sound. Today, I heard her call, "Mama" from the back of the room. And that's with a lot of stuff in her trachea.

She's been very sleepy the past two days, with very little interaction. But, she's pretty uncomfortable, so I'm okay with her sleeping through as much of this as possible. The plan right now is to take the nasal ET tube out on Friday (she will be so happy about that) and change the ET tube in her stoma to a trach. I'm anxious to see how this turns out.

The exciting news around here is that my dear friend, Ann (Jack's mom) flew out to visit me from Arizona today! Can you believe it?!  She lost her sweet Jack four years ago. And it was Jack that brought us together back when Harlie was a baby. It is amazing to see her and talk her ears off in person!! But, we forgot to get photos today. We will have to do that tomorrow.

Okay, must go. I probably won't be able to blog tomorrow. So, I'll let you know how Friday goes.

Thank you for all the love and prayers. Oh, and I received a fantastic Harry and David box this morning! It didn't have a name, so thank you to the sender!

Much love,
Christy xoxo