GI Update: Running Out of Ideas. And Patience.

The Littlest Apple’s pediatric GI emailed me this week with the results from his gastric emptying study.  His stomach is still emptying extremely slowly, and gastroparesis continues to be a big problem.  Based on what we’ve observed, that’s no real surprise.  In her email, the GI recommended that we meet with a pediatric motility specialist who may have some additional ideas about medications or treatment options.  There aren’t very many pediatric motility specialists in the country, and we just happen to be fortunate enough to have one at our children’s hospital.  While we welcome the chance to meet with this specialist (why wasn’t this suggested earlier, I wonder?), I also can’t help but feeling like our GI is out of ideas and kicking us to the curb.  That’s kind of a scary feeling…the GI knows what is wrong, can’t really do anything about it, and is done trying.  I’m also concerned that we’ll meet with this new doctor, and it will be another 2 years of waiting and trying other things (or the same ones again, as it seems we’ve tried most of the available options) and threats of feeding tubes looming over our heads.  And then The Littlest Apple will wind up with a feeding tube right as he is starting kindergarten.  I know I can’t control everything, but if we’re going the feeding tube route, I’d like it to happen sooner rather than later.  I hope it doesn’t make me sound like a monster of a mom to say that.

The Littlest Apple’s appetite has been little to non-existent lately.  I alternate between getting extremely frustrated with him for not eating (though I KNOW he’s not doing it just to spite me) and just completely tuning out his eating to KEEP from getting frustrated.  Spending 30 minutes cajoling and pleading and pretending to be imaginary characters just to get him to eat a couple of grapes (true story, many times over, partly because he now requests feeding entertainment) is exhausting and makes me just want to go crawl in my bed and cry.

In the past, I’ve taken some comfort in the Boost 1.5 we give The Littlest Apple (which we call “milk”).  This a complete nutritional supplement that somewhat makes up for everything else he ISN”T eating, provided he drinks enough of it.  Which he never really has.  I’ve mentioned before how we created this awful routine of letting The Littlest Apple watch TV while he drinks his milk.  When he’s just sitting there watching the TV and ignoring his milk, we say “Drink your milk, or we’ll turn off the TV!” and/or pause the TV frequently to persuade him to drink his milk.  That’s kind of a pain too, the constant policing of the milk.  I’d much rather use that 20 mins of TV time to take a little mommy breather from the REST of life with a 2 1/2 year old.

But our formerly fool-proof TV bribe is no longer working.  Now when we say “keep drinking your milk, or we’ll turn off the TV!”, The Littlest Apple hops down from the couch and turns off the TV HIMSELF.  Now what?

Print Friendly