Tuesday, April 17, 2007

Natalie left a great comment. "At what point does the NG tube come out for good?"

This has been our main hope and prayer for the last ~8 months.

If you have a mechanical issue, say a broken arm? Doctors are really good at fixing that. Broken arm = Cast ... fixed

Well, in Saul's case, there is no mechanical issue. The neurologist, pediatrician, gastrointerologist, and the nurses at his pediatric daycare ALL say the same thing. There is no mechanical reason why he will not swallow.

He has a strong mental association of fluid with pain, and will not drink. He will eat some food, much like a normal baby, it is a fight for solids. 1 spoon in, 1/2 spoon out. but he will eat some. He will not drink.

Since he will not drink, he is at very high risk for dehydration and all the bad stuff that goes along with a non-drinking baby.

So I asked the gastrointerologist, "what happened to babies with similar issues before NG tubes?" her reply? "they died"

When does the NG tube come out? when one of two things happens:

1) he starts drinking 150ml 6x/day
2) he gets a G-tube

SO! A G-tube goes through the stomach wall. It is surgery. It requires maintenance to prevent infection. And? it is scary.

It might help him keep more food in, as he will not have a tube down his throat holding the sphincter at the top of his stomach open. He might not pull it out as often. It is easier to put back in.

BUT? there is no guarantee it will help. It IS surgery. It has infection risk.

So that's the LONG answer to Natalie's question.

The short answer? no one knows.

He is also teething right now, so very cranky, chews on everything, lots of snot, more barf.

Is it frustrating? Heck right. I barely sleep. I worry constantly. Every time I reinsert the tube there is a 50% chance I could go into his lungs instead of stomach. It has been a challenge for sure.

But when he smiles? that is his redemption. That's why I work so hard at this, and really try to keep my anger and frustration in check.


Here are some videos

Bites my finger then goes Blah Blah Blah

Grandma Jannie tries to feed him

bloodthirsty baby eats man's fingers then socks him in the face!
It's a small light but it may help some: It's totally common for babies to refuse solids until they are about a year old or more. Not to say that like half of all babies wait that long but rather that it's not uncommon for babies who have food issues (allergies, texture issues, gerd, etc) to refuse to eat table food until their body is ready for it somewhere around 12 to 15 months.
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