Post-Op Day 16 - Scope and Post-Op 17

Yesterday (day 16) was rough. They took her into the OR to do the scope and get a good look at her trach site.

We sat in the surgical waiting area and played cards while we waited. After about an hour and a half, Dr. Preciado came and got us.

I'm having a hard time remembering what he said right now. It feels like it was so long ago. The bottom line is that she needs another week of healing, at least, before he can pull out her ET tube. I was not surprised.

And because of the wound at her trach site, he had to put an ET tube in her stoma, instead of a trach. And he stitched the ET tube in several places on her chest to make it more secure. This is temporary, so it can heal and be more stable while doing so.

I think because of the wound he was forced to move her stoma further down. While he told me about it being further down, it still caught me off guard. I couldn't help it, but it made me cry. I am trying to focus on the here and now, but in the end, I have to be able to manage her airway once we get home. And that just looks really scary right now.

This is how it is supposed to look...

See how the hole is in relation to the trach ties? They are pretty much in a straight line.

But this is how low her stoma is now...

So, you can see that the trach ties have to go around her neck, but the hole (stoma) is way lower than her neck. They are going to have to work with Shiley, the trach company to see if they can make a custom trach for her.  It will have to be shaped in a deep v so the trach ties can go around her neck.

Having to be trached is bad enough. Needing a custom made trach is adding insult to injury. Every time I turn around, something has to be so unusual.  I'm pretty sick of it.

And then I get to hear people tell me that her wound looks "great" and that this airway is so much more stable and better than the way it was. I get that they are trying to make me feel better and help me be positive.

But, it is like having to move from a house that you loved to a crummy, run down house that you hate and being cheerfully told, "But the toilet flushes just great!" So, I'm supposed to be happy?! I don't want to be here! I don't want any of this crap for our sweet, innocent little girl who hasn't done a thing to deserve any of this. Can't something, anything just go well for once?!

I think the plan at this point is for them to work with Shiley on a trach design this week. But, it isn't going to be here in a week's time. And she can't be fully awake with two ET tubes. So, I don't know how much longer she'll have to be kept sedated.

They turned off the paralytic (kept sedation on) to let her move a little. She woke up for a little while and opened her eyes. She even tried to talk! And she signed "TV". That girl!! I don't even know if she can see. She has so much ointment in her eyes. I asked her if she could see me, but she didn't answer. While it was wonderful to communicate with her, it was also heartbreaking. I wish we could just pick her up and squeeze her tight. She must be so confused and scared. She's on so many different meds, including sedation. No one wants her to be anxious. I think they are struggling to get a good balance because of her low blood pressures.

Unfortunately, her hands immediately went to to her nose. And there is no way we can let her pull out that tube. So, they had to put restraints on her wrists.

And we don't want her moving too much, and she was definitely moving a lot. So, they had to give her more sedation.

Her blood pressure has been low all day yesterday (Friday) and today (Thursday, too). They added another antibiotic today, Meropenem.

Oh, last night I got to watch Murphy in his school musical. My friend Lindsay went and used her phone to video chat in Facebook messenger. It worked great!

Okay, we have to go get some dinner.

Thank you for all the love and prayers!

Much love,
Christy xo