Kids, as much as I’d like to tell you that Namine had her trach taken out today, alas, I cannot. Contrary to what we were told by lying or possible willful ignorant trach/vent nurses, decannulation is not that simple. We have to wait a week for the results of her sleep study, and then we can go back to the hospital for decannulation.

As for the sleep study itself, well, I think it went well. There’s no way to tell, of course, until we get the results back from the lab. But Namine didn’t seem to need oxygen all night. They did give her oxygen for the last couple hours, but I think just to see the comparison of how she was statting with and without humidified oxygen.

Namine was statting in the low 80s all night without oxygen, and while that in itself may be concerning (she normally stats between 86 and 92), it bears keeping in mind that she was mad. It is a rare occasion that we see her in such a state. She had leads and wires all over her head and face, but those didn’t bother her much, if at all. To the contrary, they seemed to amuse her. Then came the nose thingy. I don’t know what to call it, but it was a little plastic thing that sat on her upper lip, between her nose and mouth. Sat, and annoyed. (Come on, can you blame her?) Even though we had to discourage her from pulling at it, though, she was still in pretty good spirits.

But when we put her in bed, they put a cannula on her. You know, one of those things that goes up your nose to give oxygen. Only this one didn’t give oxygen; it was there to monitor her carbon dioxide. She yelled. And screamed. And cried. Of course she had her cap on, and I’ve never heard her be so loud. Jess and I were at last able to sing her to sleep, but she did wake up once in the night screaming. We hope to never have to put her through that again.

So we’re home again, and I’m waiting for the dryer to finish so I can switch loads and go to bed. Namine is pretty much her happy little self again, eating lots and drinking lots. We’re to the point now where she eats a full dinner, so she no longer needs an overnight feed. You read that right, kids – we no longer use the feeding pump. Of course it has its potential usefulness; if Namine happens to get so sick that she can’t eat anything, we can use the pump to give her Pedialyte or water. But this is another thing that we hope to be rid of soon.

By the time we get to enrolling Namine in school (what a thought!) we’d like to be equipment free, except, of course, for her kid kart and/or wheelchair. The goal is to enable her to be her own mobility. The wheelchair is better for her than a motorized kid kart, anyway.