Kyrie has not eaten in three or four days. She’s not moving or playing, and only cries and sleeps. It’s very scary and very sad.
They were anxious about putting it in, so I told them I would do it myself if they would do an X-ray to confirm placement.
I nailed it.
I’m really glad Cinci trained me on that last year, and today it saved her life.
She still can eat real table food if she wants.
The doctor there told me she needed a trach, because she is using all her calories to breathe.
I said that we knew that, and he was welcome to give her one.
He said he didn’t think he could do it, but we should definitely have it done.
I will, I said, when we drive up to the trach drive through.
I didn’t really say that. But it makes me crazy because everyone keeps telling me that, but no one doing it. It’s not like a special bandaid I can buy on Amazon. I really don’t know how to get it done or what I am supposed to say when doctors tell me she needs it so we should get it done.
We are on it, is what I say, because I don’t know what else to say.
Both the doctor and the nurse practioner said she could have died, and that we did the right thing, and the nurse practioner is trying so hard to connect our Utah ENT to local people to get something done.
We will see.
In the meantime, this girl is about worn out by trying to stay alive, and sometimes it scares me that she’s starting to give up. We are both weary, I know, but our story isn’t finished yet.