Frustrated

[Guest guest]

Just had to complain about my experience this evening.

Lucas who is 8 years old and J-J tube fed at about

6:35 pm tonight pulled out the inner part of his

J-tube. I was just about to get dressed and head to

work. (Ended up having to call in.) Instead I ended up

spending over an hour on the phone only to find out

the radiologist, even after receiving a call from

Lucas' pediatrician, refused to put the tube in

tonight. I had asked the genetic counseler a few

weeks ago to get a protocol letter from the geneticist

for these type of events. I was told that it would

have to be made especially for him. The geneticist is

out of town for the month (Hawaii I believe). Lucas

has a mild defect in fatty acid oxidation specifically

thought to be a LCHAD. This means that fasting is not

an option for him. Lucas had a J-J tube designed

since his feedings pool and leaked when he had a

Mic-Key button. Currently he has 8 cc's of fluid in

his balloon and we must tape around the tube and

replace it every couple of days to keep the balloon

tight to the stoma. Well we had to decrease his rate

from 80 down to 70 cc's per our pediatricians

direction and hope we wake up with the majority of our

tube feeding in instead of irritating his stoma.

Lucas also has nearly 15 hours of venting into a leg

bag of his G-tube since he has periods of gagging and

vomiting without it. We vent over 200 cc of gastric

fluid and saliva per day. The GI drs. feel he has

reverse peristalsis besides reflux, and impaired

motility. The radiologist nurse felt it should have

been done but the radiologist would not budge. Not

sure why he wouldn't do it this evening and instead

had to wait until the am. The only thing he said was

that it was protocol to wait if the child is over the

age of 1. My son has never gone by the book. Noone

can really explain why at the age of 4 he developed

delayed gastric emptying and had to get a J-tube to

begin with. They can't explain why about a year ago

we tolerated G-tube feedings for 2 months and then

started vomiting formula. Makes me very upset that a

radiologist can decide he knows better than my son's

pediatrician. Will let you know tomorrow what

happened during the night. Sure hope that he doesn't

suffer any setback during the night and his stoma

remains well.

Loriann- mom to and 12 yr old twins and

Lucas 8 yrs. old with suspected mito disorder, mild

defect in LCHAD, J-tube fed, impaired motility,

ataxia, hypothyroid secondary to pituitary

malfunction, global developmental delays