Today's topic is
"why my child has the tube they have now?"
Lily has a Mic-key button 14 french 1.5 cm
Thats "medspeak" for she has a g-tube
The reasons she has a feeding tube are varied and complicated
She originally HAD to get a feeding tube because she was so malnourished
She was way below the growth charts,
She was scarily skinny.
At that point the doctors had
NO IDEA WHY she was so sick.
We since have found out she has many many issues
Probably all caused by Mito.
Basically everything she swallows has to be thickened and go through
a special bottle nipple.
anything less than honey thickness goes straight into her lungs.
And she doesn't always cough it up,
Which can lead to pneumonia or even drowning.
Honey thickness is very thick and she has to get it through such a slow flow nipple that
Its exhausting to drink.
a definition of thickened liquids can be found here
She also has dysphagia which further complicates things
because it means she has a poor suck and swallow.
She often starts breathing hard and sweating just from trying to drink.
So she only drinks by mouth maybe a third of what she needs to survive daily
So the rest has to go through the tube.
Also she has many food allergies
and has Eosinophilic Gastroenteritis,
her stomach and bowels swell and cause significant pain when she eats.
The pain from eating has also caused some slight feeding aversions
which have improved greatly with getting her Eos under control.
She also has such severe GERD,
That it caused Sandifer Syndrome.
She also has motility issues that come and go
sometimes her stomach just doesn't empty
or sometimes her bowels just wont move for days.
All of these diagnosis' are explained in much more detail
on my post Here
Any ONE diagnosis is reason for a child to get a feeding tube.
Lily just "lucked out" with many reasons.
Poor lily bug! At least she got really lucky with some awesome parents! Keep these post coming! I'm loving feeding tube awearness week, I'm learning so much! Thanks Alix! -Liz
ReplyDeleteYes Liz i agree. Thank you for sharing!
ReplyDeleteDitto. It's sad that people like you have to spend all your time explaining and defending medical needs, but you are paving the way for others to be free from those problems. Alix = awesome.
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