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FTA Week- Day 2

Today's topic is: Why my child has the tube they have now - a highlight on the medical conditions that require tube feeding.

This question is not as simple as it seems. The reasons Raya has a feeding tube and why she has had the different types of feeding tubes have changed over time, so here's a brief rundown. And because I like bulleted lists, I'll do it that way. :)
Oh, and for those of you who are unfamiliar with NG/G/GJ tubes, NG=nasogastric tube (in the nose), G=gastrostomy tube (in the stomach), and GJ=gastrojejunostomy tube (in the stomach with another tube going through the stomach and into the small intestine so food can bypass the stomach)
  • Painful reflux & vomiting that started shortly after birth, which led to:
    • Lack of desire to eat
    • Lack of energy due to lower calorie intake
    • Lack of tolerance for feedings due to aforementioned reflux & vomiting
      • In other words, the more she puked/spit up, the more her body reacted to food by puking and/or spitting up. Domino effect
  • Lack of sufficient calorie intake resulting in Failure To Thrive (FTT)
    • It's hard to grow when half of what you eat comes back out
  • Lack of sufficient oral-motor coordination
    • Poor coordination led to fatigue, which led to inefficient feeding skills
  • Aspiration- unsafe swallowing
    • Instead of swallowing milk/formula correctly, it pooled over her airway before going down her throat, which put her at risk for aspiration/aspiration pneumonia
  • Increasing oral aversion
    • The more she vomited, the less appealing it was to her for ANYTHING to be in her mouth, especially formula, bottles, pacifiers, spoons, baby food, etc.
    • Strong gag reflex which made eating difficult
Then there's the reasons why she needed a G tube instead of an NG tube:
  • I couldn't stand to put that awful NG tube back in her nose ONE.MORE.TIME. (62 was enough)
  • We realized this wasn't going to be a short-term problem
  • The NG tube down her throat affected her gag reflex & vomiting (or so we assumed)
  • Constant stuffy noses, which meant extra snot running down her throat, which meant more reasons to gag
Then there's the reasons why she needed a GJ tube instead of a G tube:
  • Chronic vomiting that was increasing in intensity
    • 4-5 times a day on average, sometimes less and sometimes more
  • Vomiting blood
    • Turned out to be from a lump of granulation tissue inside her stomach right next to the tube site that slowly but steadily bled for about 2 months
  • Vomiting was uncontrolled by any of the several medications we had tried
  • We were afraid of what long-term damage the constant vomiting & retching would do to her body (and teeth when she eventually got some)
Then the reasons why she went back to a G tube from a GJ tube:
  • The puking stopped!
  • The risks started to outweigh the benefits
    • We were having to drain huge amounts of bile from her stomach in order to keep it from coming back up, and we were unable to "refeed" it to her due to the adverse effects of that
    • Losing bile meant losing important electrolytes & digestive enzymes, we replaced the fluid loss with pedialyte but couldn't make up for the digestive enzymes & she went for 6 months with no net weight gain.
  • Her stomach was able to tolerate feeds again due to the almost 10 months of rest the GJ tube provided it with.
So that's the list of reasons. I'm sure there are things I've left out, and there are other things that I suspect have played a role in her lack of ability to tolerate & safely eat food & drink liquid, but we've never been able to legitimately tie them together.

There is a part of me that has always wanted to have a diagnosis that would neatly tie a little ribbon around all of Raya's "soft symptoms" and explain everything, but we have never gotten that and we realize that it may never happen. We have gotten several diagnoses for her individual symptoms, such as:
Failure to thrive (FTT)
Poor weight gain
GERD
Chronic vomiting of unknown etiology
Visceral hyperalgesia (say that 10 times fast :)
Sensory processing disorder
etc.
For us, that's pretty much it in a nutshell. There are hundreds of reasons that people need feeding tubes. We've "met" a lot of kids in the past year or so who have feeding tubes, and here are some of the reasons:
Gastroparesis (paralysis of the stomach)
Eosinophilic disorders (painful disorder where the body attacks itself when food is present)
Neurological disorders
Physical disabilities
Cancer
Heart defects
Inability to swallow safely
Genetic/chromosomal disorders
Congenital diaphragmatic hernia
Mitochondrial disease
And the list goes on.

I put together a video about Raya's journey through tube feeding. I was going to wait and share it later in the week but I decided that it fits today's topic really well.
(might want a tissue nearby :)


Untitled from Brandis G on Vimeo.

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