It’s always hard to get back into the swing of the daily routine after a vacation, even a small one like a 3-day weekend. (Of course, the nature of Namine’s condition and medication needs still require a semblance of routine, even on vacation. But it was still nice to relax and to be able to do things at our own pace.) Especially when you have to get up early the next morning for an early clinic visit. But this one is well worth the lost sleep: a trach/vent clinic, but not just any – today we start down the road for Namine’s decannulation.

If you don’t remember, there are a couple steps to the decannulation process. First, a daytime “cap trial,” which was today, where they gave us a cap to put over Namine’s trach (similar to her speaking valve, but this one is red. Oh yeah, it also prevents airflow in and out of the trach, so she has to breathe through her nose and mouth). They kept her “capped” for about an hour or so, and she did fine. Of course they gave us the cap, and we’ll put in on Namine whenever she’ll tolerate it, as long as she’s awake.

If the daytime cap trial goes well, the next step is an overnight capped sleep study, which is scheduled for September 9. Of course Namine has had sleep studies before, and hates them as only an arch-nemesis deserves. But it’s necessary to monitor her stats as she sleeps an entire night breathing only with what God gave her. If that goes well, they’ll do a bronchoscopy the next day. If that goes well, they’ll decannulate her. Done.

No, they won’t close the stoma (trach hole) with stitches. It’ll close on its own in a couple days, anyway.

Even after so long with the trach, I still don’t remember the difference between “tracheostomy” and “tracheotomy.” I think it’s something like one is the procedure of putting the hole in the trachea, and one is the hole itself (like, when you’re talking about it). And the thing we talk about, that we refer to as her trach, that’s really her trach tube. But whether it’s a “tracheostomy tube” or “tracheotomy tube,” I don’t recall.

A couple more awesome things about today: Namine is now up to 18.5 pounds, and they’ve changed her feeding schedule again. She is no longer on any g-tube feeds at all during the day, and only one can of formula at night. (Didn’t I say she’s eating like crazy?) We’re so close to getting rid of so much crap, we’re really excited.

So what did you do over the long 4th of July weekend? We (that is, Jessica, Namine, Jess’s sister Chyral, and I) went up to my Aunt CR’s house for the weekend. We made lots of food – no, they made lots of food, I only helped to eat it (I did tear off strips of tin foil for the tamales though!) – and for the most part just chillaxed.

We made our own fireworks, and watched other people’s as well, CR’s house being right on a lake. This was Namine’s first fireworks, and I think it must have overstimulated her or something. That night, she cried a lot (and she hasn’t had night terrors in a long time now) and generally had trouble sleeping. But she seemed to really enjoy the fireworks while they lasted.

CR got herself a big inflatable pool, and we all went swimming. (Well, swimming isn’t really an option when you have that many people in a 10×7 foot pool, but sitting and splashing each other is just as much fun.) Namine had a couple toys, one of which being a little plastic Dora the size of her fist. She thought it would be fun to throw Dora (who, being solid plastic, sinks) and dive after her. That was a little scary, but we had the suction machine right there, so everything turned out fine. (Namine wears an HME when bathing and swimming to protect her trach from splashing water, but not immersion!) Afterward, Namine was mad at Dora and wouldn’t play with her anymore. We now refer to that particular toy as “Stupid Sinking Dora.”

  • Michele Eiche

    we’ll have to find a floating Dora!! Glad you had fun and that everything went so well at the clinic visit! Yeah!!!!

  • Fantastic news about the decannulation and the g-tube feeds! It will be wonderful when she can get rid of all those tubes and machines. Wow! How far she has come! And such a happy little girl all the time, so precious.

  • Good luck on this process and trucvk on down the road. Ted and Betty