Feeding Tube Question - Paranoia! Help!

[OpheliasWeepingWillow]

My 14 month old dd has a gastrostomy and is tube fed at night. She's always coiling herself up in it and I have nightmares that she will strangle herself somehow. I end up checking on her constantly as she is so wriggly and alert.

I keep a blanket tucked around her and the tube down to her feet and make sure the pump is at the foot end of the cot. What else can I do??

I think you are wise to be cautious. Could you put pyjamas on her and feed the tube down her pyjama leg before connecting it to the machine? That's what I'd do, I think.

She has a sleeping bag and Right now I put the tube through the side but maybe I should thread through the bottom by her feet?

I always threaded the tube down my DD's leg and also kept the pump at the foot of the cot.

I think I would. It's much harder to get it up by her neck then. The only thing you'd have to consider, is if she could then pull the tube and cause a problem with the gastrostomy.

I've just emailed her consultant - there must be official guidelines for this sort if thing.

My DD has caused me concern re strangulation. I bought 3 sleeping bags that you put the child in with their arms free (they look like growbags!) I found putting the tube through the zip useless so I cut a hole at the bottom of the bag and threade the tube through.It worked.

Hope you understood my gobbely gook
BTW I purchased mine through Fledglings (Very Expensive) but it worked.
Good luck

Ophelia are you able do bolus feeds during the day, or one at night when she's asleep? Or does she have bad reflux and can't tolerate bolus? We used a feed that was 2kcal per ml so I didn't need to give as much liquid feed to give adequate nutrition. We pump fed for a short while but mainly bolus fed for 5 years.

We are trying to get her off boluses during the day so she is hungry enough to eat. Now has 200ml during day but that's soon to stop (I hope!)

She's on Neocate and too thin to e on Neocate Advance or Active.

Neocate - does it still smell horrible? DD was on that for a while. We used to be on Nutrini Energy Multi Fibre. I pump fed her at night 200mls once she started eating food during the day. We were lucky that she was able to drink, but that didn't start until she was about 2yrs old. The eating started properly when she was 4yrs old, which was when we boosted the feed in the overnight pump. I used to run the pump for about 90mins as a slow bolus at night and disconnect before we went to bed.

Neocate is sooooo vile. That's why she has the gastrostomy as she just won't drink it and has feeding aversions from reflux.

She has 600ml overnight which is loads but it frees up the day for us to try and get her to eat.

Have cut a hole in the bottom of her sleeping bag tonight so fingers crossed there will be less tangling.

The Neocate was indeed vile. I used to give her regular baby formula but then the reflux became too much, then we tried Neocate, didn't really make any difference so I badgered the dietician about some thickened feeds and we did the Nutrini Energy Multi Fibre with extra Calogen. That seemed to help. The reflux was never sorted with domperidone or ranitidine. We now use Omeprazole MUPS as even though she is 13 eating orally and g-tube free, she still gets night time reflux which in turn causes chest infections as she aspirates. It's a long road, but I felt that the best way to get DD to eat was to starve her, so bolus at night and one for lunch. She ate breakfast and dinner. We gave her lunch with the bolus and the more she ate the more we were able to cut back. I literally weaned her off the feeds, but always made sure that she had the right calories rather than filling her up on fluid. It's a fine balance to get it right.

It's sooooo difficult. Did she have feeding aversions?

Oral aversions? Yes but it was due a lot to having had a cleft palate, severe reflux, small jaw and an obstructed airway.