hi everyone, i have posted on here a few time about my son be born with long gap oa on the 3/12/09, he had repair on the 13/01/10. Well he came home on the 30th jan being gastrostomy fed by gravity feeds, but benjamin has suffered severe reflux, he is currently in hospital and has been fo the last 3 weeks, he was fed continuosly all day by pump, and wasn’t sick at all, there tried to reduce this to be fed every 3 hours, and do each fed lasting 1 hr, but benjamin did not tolerate this, well the plan is to come home with pump and be fed from 6pm-10pm, then 6am-9am and 1pm-3pm, as he has been classed failure to thrieve too and really needs to gain weight! i just wondered about peoples experiences with these pumps at home and how well they fit in with everyday life xx

Hi Claire
Nathan has been pump fed since he had his Gastostromy last may.
He is fed from 21:00 - 07:00 @55Ml/h overnight and 09:00, 13:00 and 17:00 @ 100Ml/h during the day.
if he is ill then daytime feeds are much slower.
This works for us and has became “Normal”, quite often we manage to time feeds for traveling etc, you get used to taking the backpack out and setting up while out at cafes with your meal.

Darrell

Hi Claire,
Harrison had a gastrostomy fitted in 2008. He too was classed as failure to thrive and wasn’t eating at all. He was actually losing weight til the tube was placed.
We did have some difficulty finding a feeding regime that he could tolerate. He seemed to cope with bolus feeds during the day, but the continuous feeds at night made him violently retch. We tried lots of alternatives, but the only way to get sufficient calories into him was to resort to a jejunostomy tube. Although he tolerated this fine, it did mean continuous feeding over 20 to 24 hours a day. The up side was that we were no longer woken up 6 or 7 times a night with him retching. The down side was that he was attached to the bloody pump all the time, which was difficult for us and must have been a pain for him!!
It was actually a gastro-jejunostomy (an inner jej tube ran inside the gastro tube, ie through the same hole in the abdomen). This type of tube was, I believe fairly unusual. One difficulty was that the inner jej tube was accidentally pulled out several times, and it meant a trip to hospital every time to sort it. It had to be inserted either by Xray, which was tricky, but at least only a day procedure, or under general anaesthetic.
Eventually we settled on daytime bolus feeds via the gastro - giving him some freedom, and night-time continuous feeds via the jej. That regime seemed the easiest way forward for everyone.
As an aside, but something to give you hope, after 14 months of this, Harrison was still not eating orally. He went into hospital for a starvation programme, which we continued at home. He is now eating so well that his tube feeds have been reduced and will hopefully stop completely in the future. Strangely, since beginning to eat more, we have found that he can tolerate bolus feeds at night now. Not sure why.
As Darrell said, the back packs make things easier, and it does become quite ‘normal’. He went to full time nursery with his pump and has satyed overnight with relatives who have coped with it.
PS Harrison had a fundoplication in 2008 too, so he can’t actually physically throw up his feeds!
Claire xx
Mum to identical twins Oliver (non-TOF) and Harrison (TOF) aged 3.