Jul 28 10
by cara
at 7:39 PM
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GI Update: Decision Time

We met with The Littlest Apple’s GI specialist again this week.

At 35 months old, The Littlest Apple is 24 pounds, 34″ tall.  He’s still not on the charts yet for weight (despite what the pediatrician told us incorrectly last week), but making progress especially given all of the hurdles we’ve faced with the NG tube.

The doctor wants to increase The Littlest Apple’s night feeds just a little, and we’re keeping him on the same formula, despite the increase in energy (which seems to just be from the calorie increase).  His energy level has to max out eventually, right?  I’m hoping we’ve reached that point, because, wow, some days really wear me out.

The doctor asked us whether we wanted to switch to a G-tube.  Now that we know this method of feeding works, we have that option.  The doctor can’t tell us with certainty how much longer we’ll be using tube feeds, but it will be at least another 3 months.  Once The Littlest Apple reaches the desired weight/BMI, he’ll need to prove that he can eat enough orally to sustain his weight before we are completely done with the tube.  It could take 6 months.  It could take a year.  It could take much longer, if his gastroparesis continues to be a problem.  So it is completely up to us whether we want to make a switch, and we plan to make a decision in the next week.  If we’re going to switch to a G-tube, we’d like to get it done before The Littlest Apple starts preschool in September.

Here are some factors we’re weighing…

Reasons to use G-tube:

  • Better for long term use.  No tape constantly irritating face.  Can be used for several months or longer before it needs to be replaced.
  • More “hidden”…you wouldn’t be able to tell he even had a tube with his shirt on.  Right now we get LOTS of attention (and staring) and lots of questions when we’re out in public.  The first appearance wouldn’t be that he is “sick” or “different.”
  • Less likely to be pulled out (mostly a concern with other children, particularly the under 3 crowd who are very curious).
  • No more monthly tube and tape changes (such misery for all involved!)
  • NG tube irritates the nose
  • NG tube in throat is an addition eating/swallowing hurdle.  I’ve noticed The Littlest Apple (who has a strong gag reflex) gagging more frequently w/ the NG tube.

Reasons to keep using NG tube:

  • Surgery needed to place the G-tube and the pain associated with recovery from surgery (a couple days in the hospital)
  • We’ve FINALLY gotten comfortable using NG tube
  • will our insurance (who won’t cover the formula b/c it isn’t his “sole source of nutrition”) even cover G-tube surgery?  Would it be considered elective surgery?  How much would THAT cost?
  • A little bit bigger deal to replace g-tube (though Dr. said many parents are comfortable doing this on their own)
  • Unsure how The Littlest Apple would handle an extra “button” on his tummy.  Would he pick/pull at it or be protective of it?

This is SUCH a hard decision to make, especially not knowing how much longer we’ll need it.  If we could say with certainty we would only need tube feeds for another 3 months, I’d stick with the NG tube.  If we knew for sure it would be a year or more, I’d definitely want to switch to G-tube.  Anything in between is a gray area for me, but I’m leaning strongly toward making the switch.

What would YOU do?  I’d love to hear some opinions!

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