The odd part is that for several months he's been on a 97% food strike. The guy who used to eat 8 oz. of yogurt, 1/2 cup of cheerios, 2 scrambled eggs with cheese, and drink 7 oz. of water daily before 9 a.m. has now been known to consume--over the course of an entire week--maybe 5 cheerios, 2 chips, 3 bites of hummus, and 1 sip of water. Every once in a while we have a breakthrough meal when he eats 30 pizza goldfish or takes 10 bites of applesauce, but they're rare & if he's not in a familiar chair in a familiar, quiet environment, forget it.
Doing well with the pediasure, water, meds, and venting via g-tube, though, and he seems to have passed the constantly gagging phase. Liquid food runs in through an electronic pump (I'll post a picture soon) that you can set for exact rate & dose. Lives in a little backpack that we carry when he's hooked up, or sits on the bed overnight. Of course there's a catch-22 with g-tube feeds & eating: the more he's tube fed, the less hungry he feels, the less he eats, the more he's tube fed... But we've tried not feeding from 5 a.m. until 2:00 p.m. to see if he'll eat & it didn't work.
I had an interesting conversation with Diedre, a speech path from Perkins lower school, who was the first person able to confirm to me that she has seen kids who were eaters totally lose interest in food when they went on high doses of neurontin. Since this is the drug that has controlled Lars' pain and saved all our lives, we'll take the trade-off for lack of interest in food. Maybe it will come back eventually. Current plan is to feed more on a schedule that resembles how people actually eat. He takes two reflux meds at four different times during the day to try to get the reflux & gagging under control.
On August 24th he'll have the procedure to change his PEG to a Mic-key. PEG stands for percutaneous (through the skin) endoscopic gastrotomy (stomach tube). This is what Lars has had since 2/21--a tube (maybe a foot long) sticking out of his belly. Now that the track is healed, it'll be changed for a low-profile Mic-key button, like this one on a grown man. And in case you're jealous, you can purchase your own on amazon.com. Installation not included.The mic-key will require us to hook up a tube in order to feed, vent, or give meds, but then the tube will come off when he's not being fed, which will be great.
We've recently had some problems with granulation tissue, and he had to have a painful procedure of burning it off with silver nitrate this week. We're trying different things to avoid that. Hopefully the mic-key will help, as it won't move as much. Lars tends to play with his tube & laugh when we tell him "no."
Lars & Joa today are at MAPVI's 2nd Annual Fishing Derby and Summer Picnic (MAPVI=Massachusetts Association for Parents of the Visually Impaired) for kids with visual impairments & their siblings. I'm hoping Larsy catches us some dinner 'cause I'm hungry even if he isn't.
