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.

Persistent ear infection

I would love to be able to write “the ear infection is gone.” Alas, it is not to be. Jessica and my mom took Namine in to the ENT clinic this morning, where they found that Namine’s ear infection is still there. Smaller, but still there. That means, among other things, that we cannot yet give her a bath.

Nothing to fear

Now that we can’t give Namine a bath for a while, I realize how much I miss giving her one. For the past couple nights, I’d made it a routine to give Namine a bath before doing her breathing treatment and giving her her meds. The goal – aside from the primary benefit of a clean child – is to break Namine of her fear of baths. I don’t think it’s fear of the water itself, but rather the running water.

A trip to the ENT clinic

We took Namine in to be seen by ENT today. The culture from her ear infection had turned out to be fungal, not bacterial, so the bacterial eardrops we had given her (that finished about ten days ago) did no good. Actually, the eardrops may have exacerbated things, and possibly sped up the rate of infection. So, it was very important to have Namine seen by ENT as soon as possible.

An apple a day

It’s been an almost immeasurably long time since Namine had last had an apple. It’s not that she doesn’t like them; far from it, she loves apples. But she couldn’t eat them, for fear of choking. The skin, especially, posed a problem. But before Namine’s cleft palate was repaired, she could not eat very much. A few bites, maybe, and the rest of the meal would be made up for by a g-tube feed.

Ear infection, again (or still?)

Yesterday we took Namine in to see the doctor. We’ve been giving her ear drops prescribed for her ear infection (just a day or two left in the original prescription, now), and we thought that the infection was all but gone. We certainly hadn’t seen any drainage or any other evidence of an active infection, until yesterday. Yesterday afternoon after therapy, Jessica noticed yellow liquid draining from Namine’s right ear, the same ear that had the minor – or thought to be minor, at any rate – infection. So we took her to the doctor.

Namine standing

Yes, another post bragging about Namine learning to stand up on her own. No, we’ll never get sick of showing videos and pictures of her. But you might. Anyhoo, I digress. Click the link to see the video. Click it. CLICK IT!

Spreading awareness

The other day, I took Namine to McDonald’s, just the two of us out to a father-daughter lunch after a hard physical therapy session. Namine had worked hard, and despite being sick, made steps (ha ha) toward strengthening her legs. She deserved a treat.

Slight ear infection

My mom took Namine to the Urgent Care this morning, and I accompanied them, in case they needed to suction out her ears. Namine has small ear canals, and she has been prone to fluid buildup, which can of course cause an ear infection. I myself was always prone to ear infections, and I remain so even as an adult. So in addition to her small ear canals (which may or may not be a side effect of the Pierre Robin, but at this point, who cares?), she’s got my less-than-desirable disposition.

Kitties are great motivators

A lot has happened since I last posted – some of it good, and some of it bad – and I apologize for the lapse. I am now unable to post from home, so I’m getting it in where and when I can. The two major happenings in our life is Namine’s new kitty, and Namine’s fever.