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Parenteral feeding- benefit of your experience please

(7 Posts)
HappilyChatterly Fri 15-Mar-13 20:54:52

Hi folks,

I am a foster carer and may have a baby placed with me soon. They require Parenteral nutrition and in order to take them home from hospital I would have to undergo some training.

Any body have experience with this, what is the day today reality/routine of it? Is it something they can transition from or is it sometimes a permenant solution. Don't want to say too much about their needs as don't want to be identifiable.

Thanks in advance for anything you can share

bigbluebus Fri 15-Mar-13 21:27:02

Hi Happily
Didn't want your thread to go unanswered - not sure if there is anyone on here with a child on Parenteral nutrition - only some like mine who are enterally fed. Hopefully someone will come along.
I have met a child in hospital once when I was in with my DD who was fed using TPN, and had a chat to his parents about it. It is a 'clean' procedure ie you have to 'scrub up' to prepare and set up feed, but this had just become part of their routine. His feed was set up overnight so left him free during the day when he was at school. If they wanted to go out for an evening without their son, then they had to get a nurse in to set feed up for him - but if he was going with them, then I think they just set it up early and he wore the pump in a special rucksack on his back. I know he was able to go swimming, but he had to wear a 'dry' suit to protect his port.
I guess whether or not it is a permanent thing depends on the reason why the child needs to be fed that way in the 1st place and if it is correctable either by surgery or growth.
My DD had a gastrostomy when she was 13 and I have to say that it was probably the best thing we ever did for her - and wished we had done it sooner - but then Gastro feeding is less complicated than TPN.

HappilyChatterly Fri 15-Mar-13 22:09:53

Thanks so much bigbluebus. My main concern is keeping it "clean" in a normal, busy family household. I also worry about getting access to sessional support and respite ifim the only one trained.

rlhmum Sat 16-Mar-13 00:05:08

hi I have a daughter who is on tpn ....what do you need to know ...feel free to pm me uf you don't feel comfortable puting details on here..x

BeeMom Sat 16-Mar-13 00:20:51

I also have a TPN dependent child (7yo) - whether or not they can transition depends almost entirely on why they are on it in the first place - but it is not impossible.

If you would like to chat, feel free to message me or ask questions here. I will be honest - it is not an easy or stress free existence, but when there is not alternative... well, it is what it is.

rlhmum Sat 30-Mar-13 22:46:02

hi just thought I would say hi to beesmum as tpn mums are few and far between xx

BeeMom Sun 31-Mar-13 02:20:32

Hi back, rlhmum [bsmile]

You are SO right about being few and far between - in real life, I have met exactly one family in a similar situation - sadly, their child's story has ended.

For us, it is one day at a time...

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