Experience of NJ feeding tubes?

[cupofteaplease]

My dd is 5 months old and has been NG fed since birth. She is currently on a pump 16 hours per day.

However, her weight gain is slow/non-existent (She weighs 8lb 5oz).

Her pediatrician wants to meet us at hospital on Thursday to discuss having an NJ tube passed. Our CNN said she might want it done there and then, or book her in next week. She said dd will have to be an inpatient, but didn't say for how long.

Have you any advice for me please?

Cupoftea why is she tube fed? I'm surprised she's not gaining weight. Ds was a little fatty when he had his ng. Have they tried different formulas?
It must be very upsetting for you.

I don't know why she's not gaining weight .

She has severe neurodisability, and part of this means she can't suck and swallow safely. They've tried different formulas, calorie boosters, thickeners, domperidone, lanzoprazole. She has reflux and is often sick, but I'm still amazed that what she does keep down isn't helping her gain. She is on continuous oxygen so her body is using energy in that way I guess.

I've asked if we can be referred to a paediatric gastroenterologist, but our 'stubborn' pediatrician wants to try an NJ tube first.

Hmm this is outside of my experience. Ds was fully ventilated and tube fed simultaneously but he was growing. Ds was on continuous /20 hrs a day feeds for a short time and then moved to regular four hourly feeds. We were told that its easier to digest food when you get a break between meals.

I guess the peg would give her a break from the reflux. But surely decisions like this should be made by doctors from different disciplines coming together?

God knows She does like to put things off, then if pushed, try and deal with them herself.

All I know is dd wouldn't survive ventilation, so we can't look at surgical options such as a gastrostomy.

I'm keen to try the NJ tube, but want to know more of the practicalities of having one fitted.

Thanks for trying to help oodles

hi, its a very similar procedure to having an ng put down but they advance the tube slowly over a period of time so that it passes through the stomach into the jegunum, sometimes it takes a while for the tube to migrate through the stomach, normally only takes a few hours.......

Oh wow, PUMBA, I just assumed it would be an instant placement, like the ng tube. Does it require an overnight stay? That's what I assumed when thecoventry said she'll be an inpatient.