To Jodi Z

[Guest guest]

Hi Jodi

Liam was 11 mnths when he got his first button it was an entristar

(hard core) he always had trouble with leaking etc, he got the mic

key when he was about 18 mnths.This is when we found out about the

problem with the stoma. The mic key could completely occlude the

pyloris, while the entristar(which is not a solid ball more umbrella)

hadnt done that however must of caused alot of pain.

Liam was in his car seat, he was due a feed really started sreaming,

by the time I got home he was drousy, cold and clammy and became non

responsive. I called an ambulance and sat with him in hospital for 6

hours with him like that and Drs telling me they didnt know what was

wrong. I had noticed his button was really tight and I couldnt turn

it. Everybody kept sayiny it wasnt the tube. I finally stole a

syringe let the balloon down which released the tube, and within 10

min he was back to normal.

Spent the whole night that night on the internet trying to piece it

all together and came up with " vaso vagal shock " caused by the

balloon in the pyloric sphincter causing him so much pain. Also

everytime I fed him in hospital the milk went straight into his

duodenum and caused 'dumping syndrome' so his blood sugars had been

all over the place.

We then spent several days visiting the childrens hospital where it

had been put in and the surgeon finally saw us ans agreed 100% that

was what was happening!! Intresting that he also said this was rare

with the buttons but had been quite common when the used feeding

tubes years ago. We were going to have his stoma resited but the

surgeon decided his stomach was to small to move it.

Basically when Liams stomach is empty it grabs hold of the ballon is

it the peristalsic muscle movement(???) anyway if the stoma was far

enough away from the pyloris it couldnt be sucked in. With only 2mls

Liam still has pain if its pulled in but we can easily pull it back

out, it kind of pops out.

Sorry this is so long, but maybe worth looking into, I cant remember

what I looked under, but I did find some papers on the internet about

gtubes and problems associated, i think mainly under paediatrics.

Dumping syndrome is quite easy to find, just type it into a search

engine.

Enough of my sagas, this was all a while ago now, it would be nice to

be able to help[ someone else with our experiences, that night on the

internet was one I wont forget,and then getting someone to believe

us. I hope Max's problem is easily fixed.

If nothing else this saga may put you to sleep.

Take care

Jody

> Jody,

>

> Max IS having a contrast study done tomorrow sometime to make sure

> that the g-j tube is in the right place. It really is the same as

a

> g-tube in that there is a button outside, but there is also a tube

> that not only goes into the stomach. There is one that also goes

> through to the jejunem. The button looks the same as Liam's, but

> there is an extra port for the j part. Does this make sense?

>

> I would be interested in hearing more about this being " sucked in, "

> as you put it, when Liam's stomach is empty. Max complains

frequently

> that he can feel the tube pulling into his stomach and it hurts

him.

> How did you know that the empty stomach was the culprit? Very

> interesting!

>

> I sure hope to be in Chicago this summer. And ne better be

> careful around Steve Irwin. His safety may be in danger if she

truly

> shows him how she feels about him!

>

> Jodi Z.