Friday, December 18, 2009

The Plot Thickens

Ok, so Playette has had this long-term congestion thing happening, right? Not sick-sick, but enough so that we've had a nebulizer perched on the arm of our love seat for well over a year. We use it when things sound more interesting than normal. I know Pulmicort and Albuterol up close and personally and I've even taught myself a device to remind me which one is for what. (Coughs: Pulmicort Prevents, Albuterol for Active)

We've done the "Baby Jessica."If you've taken a little one to have a chest x-ray, you know what I mean.

And you know what? Nothing. Yup, nothing. It's not bronchitis or her close relatives. It's not pneumonia. It goes away for a while and then comes back. My heart sinks a little each time I hear the croupy cough.

The last time we went to the Ds Clinic at Stanford, we mentioned this whole deal again and were referred to a Pediatric Pulmonologist. When BD came back from that appointment, he told me that is was recommended that Playette have an Upper GI study, a modified barium swallow study, and a sleep study done.

Over the last couple of weeks, we've covered the first two. The sleep study is on hold for now. I don't really want to go through that anyway, but insurance is holding it up, not us. Annoying to say the least, but whatever.


The Upper GI was...ugh. Playette hated it, but we learned that she doesn't have reflux so that's good and done.

I expected similar results from the Videofluoroscopic Swallow Study. Because I am spoiled and naive.

That VFSS is kinda freaky. I mean, it's not difficult, per se, but seeing your kid's skeleton on a screen and watching the liquid/food come in and go down? Well, yeah, like I said...freaky.

Turns out Playette does silently aspirate thin liquids. She's probably been doing it for a very long time. They're amazed that she's never had pneumonia (thankfully, there's only one set of bum lungs in this family) since she's essentially been "feeding" the bacteria in her lungs whenever she aspirates, allowing food to enter the windpipe instead of traveling down her throat and into her stomach the proper way.

Lemme tell you, in the grand scheme of things, not such a big deal, but as the OT was telling me that Playette would need to be put on nectar thick liquids only for the next 6-12 months, I felt myself reaching...over and over and over again into her box of cheese crackers, and bringing them to my own mouth. Emotional eater, I am.

Thoughts bombarded me.

How are we going to thicken her liquids at daycare? Oh, they won't do that for us; it's against the rules, isn't it? (cheese cracker) We'll have to go up there. Which one of us will go? How will we get away at 11:30 every day? (cheese cracker) Wait. What about snack time? They drink then, too. What time is snack again? (cheese cracker) This will never work. I'll just quit my job. Yeah, I'll quit my job and feed my kid thick liquids all day, every day. (cheese cracker) Crap. I bet that stuff's expensive. How are we going to afford that if I quit my job? (cheese cracker)


I finally snapped out of it and the OT was still talking and showing me that stupid video. "She there? She's penetrating? And right there? Right there, she's aspirating. That's not good."

(cheese cracker)

Fast forward...

It's been a week so far and we've started thickening. We've had an IFSP meeting, at which the daycare agreed to help us out on their end. Not the travesty I was imagining at all. We've got some Thick-It and I just ordered some Simply Thick that arrived yesterday. So we'll practice until we get it right.

Just like everything else.

If you have any experience in this area, please do share. I'd love to hear about what you've done, what products you've used. If you blog and have talked about it, drop a link in the comments and I'll jump right over.


Tricia said...

Ugh. Sorry, C. It may not be the worst thing in the whole world, but of course you are concerned!!! I am so sorry. We used to thicken G's liquids when she was younger because she wasn't handling it well. We actually just used baby rice cereal at the time. It's cheaper than thick-it--but maybe not as precise???

I'll be interested to know what happens next. Anything? Do you know?

ashley said...

I'm sure the thickener isn't a lovely chore, but how awesome that you might be able to cut back on the nebulizer treatments!

Michelle said...

I don't have any experience, but I'm glad to hear you have answers now!

Molly said...

I have no experience with thickning formulas, but I have to say your description of the cracker eating made me giggle. It also basically described my life. haha.

Karly said...

Reminds me of when I thought our Thyroid pill might be the end of the world, but it just turned out to be a regular old PITA.

Wishing you only a tiny PITA too, mama!