Since we switched out Namine’s stoma gauze for Mepilex, she’s been almost completely free of coughing. Score one for the thinking parent. Pretty soon, though, she won’t need anything to cover her stoma, because she won’t have a stoma to cover.

Monday, of course, is surgery day; Namine is having her club foot repair. When Namine was decannulated last month, they expected her stoma to close up in a couple weeks. Well, it’s still open (it is partially closed-up, but still open), so before they operate on her feet, ENT will suture her stoma closed. A couple stitches, maybe a few more, and we’re done. Namine’s physical therapist has no doubt that she’ll adjust easily to having no opening in her neck anymore.

Is it odd to be attached to – I don’t know how else to put it, maybe “fond of” – taking care of Namine’s trach, taking care of her stoma? Don’t misunderstand me; I’m so glad that she’s rid of the trach. After all, it’s a significant amount of equipment we no longer have to lug around; it’s less “special needs” stuff to get stares about. (If I can veer off on a tangent here – nothing about Namine’s “special needs” stuff bothers me. But when she’s older, she will understand that there’s already enough to separate her from normies. I don’t want her to worry about more than she already will.) But doing trach cares was a part of her life, a part of her. All the same, doing her stoma cares now is a part of her, and I will still miss it.

I was worried about what her ortho doc said – about how there’s a chance that because her feet have been too long in their “clubbed” position, they’ll regress after a while, and either she’ll need the repair (or a different kind of procedure) or it’ll turn out that this was a waste of time, money, and pain. But that’s something I can’t control, and I’ve more less accepted that what will happen, will happen. Nothing but time will show us how Namine’s feet respond. I say I was worried, but part of me still is. Well, guess what? That part is the parent.

  • I hope all goes well on Monday.