Tuesday, February 18, 2014

Feed Frustrations

It's been about a year since we lost the use of Aidan's stomach.  We don't know exactly why it happened. 

In December of 2012, we fed Aidan exclusively via G-Tube (into his stomach).  By January, he was vomiting everything we fed him.  Through February and March, we tried different Formulas and different feed schedules and different rates.  At the end of March, Aidan was admitted to the hospital for IV fluids and tests.  A dye study confirms that the tube is in place.  A Gastric Emptying Study was fairly traumatic, and gave us no additional information - probably because Aidan couldn't keep the tracer down.  No doctors gave us any answers, but a GJ-Tube was placed in hopes that if we couldn't fix Aidan's stomach, we could at least avoid it.

The stomach problem was never solved - just brushed aside.  It has always nagged at me.  Why does a stomach work every day of a child's life, until the day it stops working, and never works again?  What caused this?  How can we expect a food trial to be successful - ever - without a functional stomach?  Did this have something to do with the formula change?  Nutricia will argue that nothing happened until they're blue in the face, but Aidan's stomach worked before the formula changed, and never worked again afterward.

So here we are.  Over the past six months, Aidan's been hospitalized for some awful things - severe constipation, feed intolerance (even through the jejunum), intussusception - things just aren't going well for him.  GI agreed that something seemed amiss and felt that it was (finally) time to revisit the stomach problem.

The orders were to give 1-2 ounces by G tube once or twice per day.  And what???, I asked.  "And we'll see what happens."

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