GI Update: A Balancing Act

Yesterday was The Littlest Apple’s first GI appointment since his NG tube placement, so I figured I might share a little update.  It’s been a while since I talked about the latest happenings with The Littlest Apple’s gastroparesis.

Even though I didn’t share an update, we did finally get the pump and home health care, about 2 weeks after the tube placement.  Due to the delay getting that started and the NG tube getting pulled out while we were on vacation, we’ve only been administering the night-feeds for about 14 days total.

At his appointment yesterday, The Littlest Apple weighed 24 pounds.  That’s a gain of 1.5 pounds in 2 months.  I’m guessing most of that has occurred in the last couple of weeks, since starting the night feeds.

His gastric emptying study showed that even with the newest medicine he’s taking, domperidone, The Littlest Apple still has severely delayed gastric emptying.  That wasn’t exactly news to us.

So, the night feeds have been going relatively smoothly.  Here are a few thoughts on that:

• By smoothly, I mean that he’s not vomiting it all up, and not waking up too much at night. There have been some other issues I’ll discuss more in a minute.
• He has gotten tangled up in the tubing at night a few times, though not in a scary tubing-wrapped-around-his neck-sort-of-way, though that is a concern of mine since he’s a very squirmy sleeper.  I just go in, do a quick reset (the pump has an alarm on it that beeps when something goes wrong), and he goes back to sleep.
• Even though he’s more than old enough to be in a big-boy bed, he’s still in a crib for now because we don’t want him getting up and wandering off while still connected to his feeding pump.
• Normally an early riser, he’s waking up even earlier (if not in the middle of the night) because he has to go to the bathroom.  A logical result of “drinking” 10 ounces of liquid all night long.
• His daytime eating has decreased.  Most days he doesn’t eat more than a couple of bites of fruit or a pretzel stick or two before 3 pm.  He’s eating more at dinner though.  And since he’s gaining weight, I guess it still works out.  But obviously, the goal is for him to get used to eating more and discontinue reliance on the feeding tube.  I’m a little concerned on this front, but I guess we’ll get his weight up, then fight that battle.

Now for the biggest change of all–The Littlest Apple’s behavior.  Since beginning the night feeds and increasing his caloric intake, his energy level has also increased.  Significantly.  And while this makes sense in most other children who weren’t previously getting enough calories, The Littlest Apple has NEVER been lacking in energy.  While having a spirited, high-energy child has been challenging at times, I’ve come to embrace it and enjoy his extra zest for life.  But the last 2 weeks of night feeds also changed our previously spirited-but-happy-high-energy child to a complete unmanageable hyperactive, tantrum prone nightmare.  The last 2 weeks have been really awful.  Our parenting “A game” wasn’t enough.  We suspected The Littlest Apple was reacting to something in the Boost 1.5, but we weren’t sure what.  The third ingredient is SUGAR, but there are also a whole bunch of unpronouncable chemicals.

We discussed this with the doctor, and big kudos to him, because he actually listened and observed.  He didn’t dismiss us by saying “well, I’d have lots more energy too, if I was getting the calories I needed,” which is what I’ve heard from several other people to whom I expressed my concern.  The doctor, who has already been somewhat taken aback by The Littlest Apple’s energy on prior visits (given his ill-fitting Failure To Thrive label) saw The Littlest Apple literally bouncing off the exam-room walls.  He suggested we try a different formula, and switched us to Compleat Pediatric, which contains pureed chicken, green beans, peas, peaches, and cranberry concentrate.  I can actually pronounce many of these ingredients, and honestly, it seems a little more wholesome to me.  Real food in pureed form.  Now, I will admit that the third ingredient of this one is corn syrup.  And there are a few less calories and fat grams per ounce.  But we’ve used this new formula for the last two days and seen a MARKED difference in The Littlest Apple’s behavior, and I don’t think it is just a coincidence.  We have our happy-spirited child back!  Thank goodness.  I can handle this boy.  Usually.