An example of use is: “The effing state is cutting off our nursing.” That’s right, kids, since Namine is now without a trach (believe me, not really complaining), the state has decreed that in roughly two weeks’ time, we don’t get any more nursing. At least they gave us some advance notice. (Yeah, two and a half weeks.)

It’s a curve ball, to be sure, but we’ve gotten curve balls before. Like when the company I work for decided to cut the personal max insurance from 2 million to 1 million, thereby cutting Namine off completely and immediately. So it’s definitely not the worst. And it’s not unexpected; we knew that having the trach qualified Namine for more than she would qualify for normally (if I can even say that). Namine is still disabled, true, but without the trach, she doesn’t need nearly the great amount of care of nursing assistance that she needed with the trach.

But the tricky part is the upcoming foot surgery. We don’t know how Namine will handle recovery, or even being casted. Aside from her attitude, our main concern is twofold: how much pain will she be in? and will she be able to maintain her currently-high sats while in pain? We know she drops her sats significantly when she’s sick; so much so that we’ve kept the large oxygen tanks for when she is sick. WIll she do okay? Will she need someone else, regardless of what the state says, to help take care of her? These are the unanswered questions. And the only answer will come through time.


  1. Yeah, I haven’t forgotten you, Mom. But you’re not available on Tuesdays, and Namine has therapy on Tuesdays. We’re hesitant to drive with only one of us and her NOW. What about when she’s recovering from surgery?

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