separate G and J tubes - Donna

[Guest guest]

Hi Donna,

Zachary and have separate G and J tubes. (Actually Sam did and now

we pulled it out but will be creating a new jejunostomy in April). Anyway,

when I read about the GJ tubes I am really glad that we picked this option.

of course every situation is individual but this has been best for us.

Our surgeon feels that a GJ tube is not a good long term option for a

child. In his opinion, (just an opinion everyone) he feels that the risk

of perforation is too high. Plus it keeps the pylorus open and often

promotes backwards motility, (retrograde peristalsis). We have had a few

young children die at our hospital who had GJ tubes due to perforation and

then sepsis.

The type of jejunostomy our surgeon does is called a roux-n-y-jejunostomy.

The surgery is more extensive than a traditional jejunostomy but safer in

the long run. It creates a limb off of the intestine in which to put the J

tube. because of this the incidence of perforation is much less. And

what is very nice is that what goes in to the J tube site is a short stem

Mickey ***G** button which you can replace yourself safely at home. This

is not the case for GJ tubes or most j tubes because they are so much

longer and you have to do it under fluoroscopy.

Having the 2 tubes allows my children to " sham " feed. They can eat soft

foods and drinks and even a few crackers. This gives them the social

pleasure of eating and keeps all those speech muscles in the face healthy.

Also the act of eating - even without digesting - causes the body to

release substances which are protective to the liver, for as you know

hepatotoxicity is a big risk with TPN. because they have a separate G tube

they can hook this up to a drainage bag when they eat and the food simply

drains out the G tube into the bag. (it is under the pants and no on even

knows).

I believe this is a surgery most children's hospitals do although recently

we had a family fly in from Oklahoma as apparently the surgeons in that

state could not or would not do that type surgery on the child. Our

surgeon did it for the child.

RE: the pylorus not opening. Both Sam and Zach had severe pyloric spasms

and antral spasms of the stomach as infants which kept their pyloruses

closed as well. To pass the NJ tube in he was put to sleep and it

was placed under endoscopy so if need be they may be able to try that with

.

Both boys eventually had a surgery called a pyloroplasty at age 12 months.

however, altering anatomy in their case did nothing to alter function.

Even though the pylorus is wider now -the stomach does not empty any

better. In our case this is due to autonomic nerve dysfunction and unless

you get the autonomic nerves to give the right message to the stomach

muscles, you can change the anatomy all you want but the stomach will still

not work. However, for other children the pyloroplasty seems to have been

a good option. Not sure why but jus wanted to tell you that it could go

either way.

Donna, I hate to make blanket statements on the list as every situation is

different. But wanted to comment on your writing that was given

lactated ringers. Lactated ringers have lactic acid in them and for most,

(maybe all but not sure) people with mitochondrial disease they are

considered something to stay away from. Once I said that to our doctors at

CHW, they agreed right away . It makes perfect sense for kids that already

struggle with lactic acidosis but no one ever really thinks about what is

in the LR . Now my children are given allergy bracelets with each

admission for lactated ringers - not an allergy but the MD's want it

treated that way.

Anne

PS are they running cultures for yeast too aside from bacteria???? My ids

have " leaked " yeast out of the GI tract into the blood several times -

same phenomenon as when they do it with the bacteria.

Message: 3

Date: Tue, 15 Feb 2000 07:50:31 -0500

Subject: in Hospital/Separate G & J Tubes

First, cultures showed no growth so covering GI Dr. said ride it out with

extra lactated ringers. By Sunday he was 105. and his new gj tube fell out.

Does anyone out there have a separate g and j? If so please tell me

anything you can.

We are hoping to leave the hospital in time to make our 3 appointments with

the real specialists at the Cleveland Clinic.