GI troubles

[Guest guest]

Hi Everyone,

We've been given some GI surgical options and I wanted to run it by you

all and see if you have any advice. You may remember that MacKenzie had

a G/J tube placed last year. The j for feeding, the g for drainage. This

has worked very well for her and she is growing and developing well. The

main reason she got the tubes was due to reflux and the fact that my

entire hospital felt a Nissen not to be the best option.

Now the problem. She completely mobile now and the tubes really hold

her back! We can get by with giving feedings at night and nap time, but

the drainage must be open 24/7 or she's wretching and gagging on stomach

secretions. The surgeons say that they don't even need to do an emptying

study, she drains about 150ml/24hrs. and if her tube is closed she

chokes. She of course is on all meds to try to help.

My first train of thought was to do a Nissen/pylorplasty, relieving

both reflux and poor emptying. The surgeons say they would rather keep

her on j feedings and place an internal shunt from her stomach to her

small intestine to drain secretions internally. We would eliminate tubes

during the day this way, which is what I asked for. I just don't know if

this is what we should do.

My first inclination is still Fundo/Pylorplasty as it seems to take

care of all her problems with one produre (hopefully). The docs say that

kids with GI issues related to cranial nerve damage do not do well with

this procedure as the underlying issue is still there.

Our long term goals are oral feeding,obviously, or at the very least

G-tube bolus feeding, so I'm not sure we'd be going in the right

direction with the shunt. On the other hand, the GI people feel her

reflux may become less of a problem as she grows and she may not need

the Nissen.

ahhhhhhh! What should I do?

Jeanie Colp mom to Tyler 8, Zachary 5, & MacKenzie 20mos.CHARGE