She Will Amaze You

I'm becoming anxious over Ellie's upcoming sleep study and hospital stay. It's only a week away. This time next week, we will be "checking-in" to the TCU, dropping off her bipap machine, and making our way upstairs for her sleep study.

Ellie hasn't had a formal sleep study done since the one last September, and then we waited a very long time to get the results back. This time, since she's being admitted for planning and assessing, I am under the impression it will move a lot more quickly.

Last time, I tried to sleep while I was there. This time, I fully intend to sleep away most of my Monday, and plan to stay up, with the tech, the whole time. I want to see what they're seeing. I want to see how badly she desaturates, and how long it takes for her to recover. I know it hasn't improved from the fall, and I am so, so nervous for what that will mean for our future.

I don't want Ellie to have to have a tracheostomy put in. I really, desperately want to avoid it. But, if it means keeping her safe, if it means ensuring she can breathe, it is obviously worth it.

Yesterday, we drove up to Squamish to visit our friends. We went for a hike through the forest, out along the river, and settled ourselves on the river bank to enjoy snacks and some drinks. Ellie loved watching the dogs run in and out of the water, splashing all over the place. She loved the feel of sand under her toes, and running through her fingers.

Would we still be able to do things like that? Would we still be able to be outdoors, what about sand? What about water? What about a lot of things...

Then I think, oh, we could just leave her with my parents. But, what about the training? Having a trach isn't just some little thing. It's huge. The training is a big deal. I wouldn't just be able to leave her with whomever is available to watch her. I would have to have a trained person with her all the time.

Would I still be able to work? Would Jason feel comfortable being alone with her? Would my parents, his parents do the training?

There are so many questions.

What happens if they decide not to do a trach. Are we going to spend months in the hospital, dealing with every cold and flu that hits us? How can Jakob have a social life, if we're always worried about Ellie catching something. Is it better to spend a week at the hospital at a time, than to have a trach?

My mind starts spinning all the questions around, and it makes me feel sick. I wish I could just fast-forward to the day they've decided what to do, and we just do it.

My little, beautiful baby girl... what are we going to do?