decannulation

  • Still sick

    After therapy this afternoon, Jessica is going to take Namine to the pediatrician. It’s been two weeks, and she still has a cough and congestion. Namine seemed to be doing okay last night, but this morning when she woke up, she couldn’t breathe through her nose. Sneezes are messy, too. Ucky.

  • Embracing the storm

    I actually meant to talk about this the other day. On Sunday night we had a crazy, windy, loud thunderstorm, and Namine could not sleep. But her inability to sleep was not due to fear of the storm; on the contrary, she loved it. Loved it. The constant patter of the rain – and patter somehow does not do the sound justice – and the flashes of lightning, the crashing of thunder, all of these things thrilled Namine to no end. Awake, sitting up in her bed, she laughed and clapped, her energy seemingly a direct proportion to the power of the storm itself. She did not go to sleep until the storm was over, close to midnight.

  • Love’s own reason

    Love’s own reason

    Perhaps you’ve heard; perhaps not. The divorce rate for special needs parents, according to word of mouth, is 85%. I’ve also heard 82%. Upon doing some research, though, it’s hard to know where this statistic came from, or exactly how old it is. (With the assumption that the divorce rate goes up each year, that […]

  • What does hair mean to you?

    What does hair mean to you?

    Another day, another therapy session. There’s not much going on, aside from the usual. Namine is trying to eat us out of house and home, as usual – and she’s not even three yet! What’s going to happen when she’s a teen? But I digress. Having nothing out of the ordinary on my mind, today’s post is instead a philosophical one: what does hair mean to you?

  • Taking a deep breath

    Of all the things that we fear above all else, as parents of a post-trach child, is repiratory illness. Pneumonia can be deadly to any child, but if a post-trach child gets it, the most likely end result is a re-traching. (My spell checker is having fits at those sentences, but it also doesn’t think tracheostomy is a word, so to heck with what it thinks.) Namine has a slight cough; she has had it for a few days now, and we’re not sure what’s going on. It’s not common enough to take her in to the ER, but it raises its head often enough to remind us that it’s still there.

  • Understanding skin physiology

    Understanding your child’s physiology – special needs or not – is crucial to understanding not only their current condition, but what might affect changes in them as well.

  • Coincidence or providence?

    Instead of doing one of those “year in review” posts, I’m going to talk about something else.

  • I love my daughter’s neck

    You might take one look at that title and say Paul, my good man, you have gone off the deep end. But bear with me. And a fair warning: there is no merit or information to this post. It’s just me, talking about my beautiful daughter.

  • Like second nature

    I had an interesting thing happen to me on Friday. Of course I didn’t get to talk about it because more important things happened. But Namine is doing better now, so I can bring it up. Anyway, this reminded me how being the parent of a special needs child has changed me. It has shaped and formed me, as a person, in ways that might never have happened otherwise.

  • On boundaries

    One of the people I follow on Twitter posted yesterday posted (and I’m more or less paraphrasing, since I can’t find at the moment the original tweet), “a child without boundaries is a child with much stress.” I’d like to chime in here.

  • Looking ahead to surgery

    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.

  • Stoma care: using Mepilex instead of gauze

    The question of keeping Namine’s tracheostomy stoma covered was raised in my mind. Since decannulation, we’ve kept it covered with gauze. It seems like she’s coughing when she has the gauze on, but when we take it off, she doesn’t cough as much or at all. So I called the ENT department at Children’s Hospital around 2:00 this afternoon. I got a return call at 5:00. I guess that’s about par for the course.