Update on Colin-'s G-Tube/Nightmare

[Guest guest]

Hi to all - I haven't been in touch lately, but wanted to give you

all a heads up for those on the G-Tube. Sunday night our son Colin-

stood by my bed and called for me which started happening more

often since he figured out how to un-hook himself from his G-Tube.

Usually, we bring him back to bed and hook him back up and all is

well, but this time, he smelled of vomit and his entire button was

on the floor of the hallway still inflated. He had pulled the entire

button out through the incision in his stomache. Devastated, we

tried to calmly put it back in, but it wouldn't go. Apparently the

Doctor is wrong when they say you have 24 hours b/c this had only

been a short time and it was closing up. We had to call 911 at 2:30

in the morning in the middle of the snow storm to have him brought

to th emergency room. No doctor there could fix it b/c they didn't

know what to do - so they put a cathedor(Spelling) in the button

spot to prevent it from closing all the way. Of course b/c yesterday

was a Holiday, his surgeon was nowhere to be found. We have to bring

him to NY today to see what is next. I don't know what to do now. I

told my husband that obviously it doesn't hurt him to pull it out

and he has been unplugging himself constantly. Finally, after a

year, my worst nightmare has happened. I always worried about what

if he pulls it out and now I know. I just wanted to share with the

group. I will email again when we find out what happens.

Thanks.

M.

(mom to Colin- 4 RSS and Gillian 7 months non-RSS)