Last night Namine didn’t need any oxygen. It seems like with this cough and ear infection, she’s been kind of on-again-off-again needing the oxygen. But I put the pulseox on her after she was asleep, and she was satting at 88. I admit I was a little worried, because during her nap, she was dipping under 80 and Jessica eventually had to put the oxygen mask on her. I expected the same thing last night, but Namine did well, and the pulseox never alarmed once. I think – I hope – her cough is finally going away. She has been coughing less, but she’s still been coughing some mucus out of her stoma. I really hope we can get rid of the ear infection soon, too. We’re closing in on the foot surgery date fast.

That’s something else that has me concerned, for a few reasons. I mean, of course there’s the usual: recovery from surgery, pain, all that fun stuff. I mean, I know that Namine’s pain threshold is very high, probably higher than mine. But that doesn’t mean that I’d just leave her to deal with it. Far from it; I’d take all the pain on myself if I could. And of course there’s recovery time and the fact that no one has really told us what will happen after they remove the casts, about 6-8 weeks after surgery. We know she’ll need to wear braces, and they’ve said there will be two sets, one for daytime and one for nighttime, but nothing beyond that. And that there’s a chance that Namine’s feet will regress back into their original shape. (But that’s completely out of our control, so I’m trying not to think about that.)

No, there’s also the concern of other post-surgery things. Whenever we bring Namine into the hospital, whether it’s for surgery, a checkup, or because she’s sick, she almost always ends up catching something there and having to stay longer because they don’t want her going home sick. A good case in point is her cleft palate repair. When she went in for surgery, she was fine. When she came out of surgery, her ear was draining so much crap because it got infected. How this happened, we have no idea.

An added complication may be the fact that Namine is now decannulated. We’re really not sure how she’ll do, being intubated this time. Her airway, while fully capable of allowing her to breathe on her own (obviously, or they wouldn’t have decanned her), is still smaller than that of a normy. When she’s awake, even when she’s asleep, this doesn’t pose a problem. When she’s put under for surgery, however, she’ll be much more relaxed than she would be during ordinary sleep. They’ll need to keep a close eye on her, especially, I think, when they’re done and pull the tube and she’s still knocked out.

I think it was Dr. Denny, Namine’s plastic surgeon, who said that she has plenty of room in her airway for being intubated. The fact that Namine’s stoma is still open may be a good thing, in any case. They might use that instead of going through her mouth or nose, since it’s still a good airway.

Namine’s funny, though. It seems like she can choose what to breathe through, her nose and mouth or her stoma. When she gets mad, she breathes through the stoma, but if I tell her to breathe through her mouth and nose, she will. I would think that she’d have to breathe through the stoma as long as it’s open, since it’s the first entry and exit for her airway, but this doesn’t seem to be the case. Anybody with enough medical know-how to explain this?

  • I noticed the other day that sometimes she breathes through her stoma and other times through her nose & mouth. Interesting.

  • Yeah, I don’t know if other trach (and newly decanned) kids do that too, or what. I’ll have to ask around.

  • Amy Robinson

    Knowledge is the best power. Ask Namine’s doctors for more information or a support group that can help you. I would think that, since she learned to breathe differently because she couldn’t breathe normally, that it will take more time to learn how to breathe the “right” way.