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SN children

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Original poster

Tube feeding pumps/ equipment

49 replies

tooloudhere · 02/03/2012 13:15

Really interested what everyone else does as far as being portable. We have not really been given a portable solution, we have the infinity pump which is small and light but are still expected to lug it around on a drip stand which is far from ideal. We have been using feed pumps for a year now but despite asking never had a better solution.

What do you do to pump when out? Is it worth keep asking are there better things out there. He is getting heavier now (yay) but this just means getting him and all the stuff out of the car in one go more difficult.

All ideas appreciated.

OP posts:

SallyBear · 02/03/2012 13:44

I am no longer tube feeding my DD. When we did, we always bolus fed, and then would use a pump at night when we were weaning her off liquid food onto food during the day. I have seen mini stands to attach onto the back of pushchairs for when you are out. What would your local NHS PCT Equipment Loan Services recommend?

ReindeerBollocks · 02/03/2012 15:13

Hi Tooloud

That bloody infinity stand is a PITA for travelling around with. The feed bag often falls off if the stand is moved. However we only feed at night so it's not too bad.

We were given a rather nifty backpack. If you unscrew the pump from the stand, the pump fits in a little slot and the bag can be clipped into the top of the bag. The bag then also has a little hole in the side so that the feeding tube can be used.

I have one of these knocking around if you want it? Or you could contact your supply company (we use nutricia feeds and they have their own company who deals with storage and delivery of feeds) and see if they have one for you? Makes day feeds easier.

Obviously this only works for older children and I'm not sure if you mean for a baby or young child?

bigbluebus · 02/03/2012 15:55

DD is tube fed on a pump during the day. She has always had a small 'holder' and ruck sack supplied with her pump. We used to get our pump from Abbots but now have a Nutricia pump which comes with a small clear plastic stand which the feed bag sits in and the pump slots in underneath it. This then fits into a small ruck sack and the tubing comes out through a slot in the side. DD is in a wheelchair so the bag hangs on her chair - but it can be worn as a rucksack if the child is walking.

Original poster

tooloudhere · 02/03/2012 16:35

The feed bags you mention are these preprepared bags of formula that attach to a giving set or a bag that you fill yourself with stuff you prepare?

We have nutricia for the monthly delivery but the formula we use is not ready mixed. I get giving sets that screw onto a baby type bottle and the bottle needs to stay pointing down to stop air so not to sure how a rucksack would work.

At night we hang the feed in a big plastic reservoir then attach the giving set to that. I am sure there must be an easier way than what we are doing!

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starfishmummy · 02/03/2012 16:36

We have a flocare infinity from Nutricia Homeward. We have just had a small backpack with a tiny stand in it. Sounds like the one bigbluebus mentions. We have only had it a couple of weeks (the previous design was bigger with no stand). It seems to be fine.

Depending on the feed and what ancilliaries you currently use, you might need different reservoirs/giving sets for use with the bag. We have a feed that we have to decant into reservoirs so DS has 1.5l topfill reservoirs with a long giving set on his big stand for overnight; but for this bag we have 500ml (semi rigid) reservoirs and a separate, shorter giving set. If you have the feed in packs that can hang directly on the pump it is obviously easier.

Original poster

tooloudhere · 02/03/2012 16:40

Oh forgot to answer he is a baby really just over a year old. I have brought this up many times with the dieticians and they insist the stand is the only way to do it, maybe our PCT are tightarses.

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2old2beamum · 02/03/2012 16:51

Both of mine are fed during the day 1 on continuous feed. They have little rucksacks, supplied by Fresenius Kabi can take feeds which you make up at home. Quite easy to use pump.

bigbluebus · 02/03/2012 17:22

We use the ready mixed bags, but they will supply reservoirs which you can put your own liquid in - as long as the reservoirs have been prescribed by the dietician.
tooloud Is your baby mobile? If so, maybe that's why they don't think the back pack is suitable - although you presumably have to keep DS in one place when he is connected to feed on a stand anyway so can't see what difference it will make - he just wouldn't be big enough to carry the backpack - but if you are going out it will hang nicely on the pushchair

Original poster

tooloudhere · 02/03/2012 17:35

Bigbluebus, he is sort of mobile but nowhere near carrying a bag in any form. I wasn't thinking that really and he has been fed this way since tiny. It is more the practicalitys of trying to wedge stand in pushchair, car so it doesn't fall over. A bag would be more subtle just the purple tube going under his top!

In the house if he is having a play around I just keep moving the stand and detangling him! Again carrying him with a bag would be easier as I could put the bag on my shoulder and carry him wold give me an extra arm. He feeds for 20 hours out of 24 so it is a lot of time.

I think I will be having a word again to see what can be done as I have been led to believe that a portable drip stand and pump is as portable as it gets and after the big pump in hospital I was grateful not to have one of them.

OP posts:

bigbluebus · 03/03/2012 11:06

Just to add that our suppliers offer a choice of 2 lengths of tubing - we use the shorter one as DD is in her wheelchair all day - but the longer one might give your little one a longer range -as long as he doesn't get tangled in it.

Good luck with tackling the dietician.

2old2beamum · 03/03/2012 17:56

Bigbluebus ,may I ask who supplies your feeding stuff? We wre told we c
couldn't get long tubing as it was not compatable with PEGs.
TIA

2old2beamum · 03/03/2012 17:58

Bloody keyboard

bigbluebus · 03/03/2012 18:23

2old2beamum we get our 'kit' from Nutricia. DD has the shorter tubes but we were asked which ones we wanted when we moved over to this company a couple of years ago and I'm pretty sure one of DD's classmates uses the longer ones.

starfishmummy · 04/03/2012 00:10

We decant into reservoirs too. Our supplies come from nutricia homeward and you should be able to ask the dieitian to arrange for a carry pack anfd the appropriate reservoirs.

Have you considered joining PINNT, which is a support group for people/carers on artificial nutrition?

www.pinnt.com/
We've had lots of useful info from them - they do various "guides" and they may able to put you in touch with someone near to you who is in a similar position.

starfishmummy · 04/03/2012 00:10

www.pinnt.com/

should link now

Original poster

tooloudhere · 04/03/2012 09:14

Thanks for all the info, I will speak to the dieticians on Monday hopefully and see what they say. It is interesting to know about the different legnth giving sets as I have in the past asked for a longer one for night as we are at the very limit on the existing one to get it outside the cot to a safe place for the pump.

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ReindeerBollocks · 04/03/2012 15:15

Good luck with the dietician, we are also supplied by Nutricia Homeward, however our different length feeding tubes are supplied by the different Mini button suppliers. We have recently had DS's mini button changed and they gave us three different connectors to use.

We also bolus and use the ready made packs, and I know Nutricia do supply the chambers another poster mentioned, which has been helpful.

Thanks too the Starfish, I didn't know about that website, and goodness knows we've had all sorts of problems with DS's button since he got it.

Original poster

tooloudhere · 05/03/2012 11:56

Umm, had conversation with the dietician and it seems it is our pct that are tightarses after all I was joking when I said that originally. Even though we are supplied by nutricia it they said our areas contract is to provide x y or z so even though there are smaller reservoirs and longer giving sets we can't have them. The big reservoirs we get won't fit in a frame for a bag and as we have to mix his formula as is specialist one it won't attach like the premixed bags do. So I am left putting it in a baby type bottle and attaching the giving set to that.

I am not quite ready to accept defeat yet, am now wondering whether a bag can be altered to take our set up so at least we are more portable. Watch this space! Thanks for the ideas everyone x.

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bigbluebus · 05/03/2012 12:23

tooloud How ridiculous. They are telling you that what you need to make your life easier is available from the firm that supply your equipment - but you can't have it. It defies belief really. DD has boxes of 500ml reservoirs on her prescription - but we don't use them. The company won't remove them from their computer system unless the dietician (who i never see) writes to them to tell them we don't need them- so unless I specifically state every month "please don't send any reservoirs" they will send them to me. Fortunately I have only missed their phone call once so they got delivered and wouldn't take them back as the box had been out of the delivery drivers hands for more than 2 hours by the time & got home and saw the delivery on my doorstep they were much appreciated by the local childrens hospice

Original poster

tooloudhere · 05/03/2012 13:43

It is ridiculous isn't it. I was starting to get paranoid that they didn't want to help us ( you know one of those I need more sleep thoughts) but it is the whole of our district that doesn't deserve the most appropriate supplies not just us.

We get the 1litre reservoirs as they suit the most people's needs apparently. It is not like being tube fed is a lifestyle choice and you have an alternative.

OP posts:

bigbluebus · 05/03/2012 15:22

I may be wrong - but I would have thought that the smaller reservoirs are cheaper than the bigger ones - so does that mean they are supplying everyone with something that costs more just because it is easier ????? I can't see how it makes any difference to Nutricia - they stock both sizes and just send whatever you are prescribed. I suspect your PCT is just being difficult! I am finding it difficult to see how this can be a 'cost' issue.

starfishmummy · 05/03/2012 16:21

Tooloud, it is mad isn't it. DS is 13 and I could write a book on the tube feeding equipment issues alone!!

And yes, although you shouldn't have to, I imagine you can adapt a small backpack as I have seen many at Pinnt weekends! Velcro is probably your friend!

Original poster

tooloudhere · 05/03/2012 17:05

From what was said it is the 'contract' that dictates what can be supplied to us. Perhaps a contract with less options is cheaper who knows, funnily I did get the impression she was being honest with me this morning I did keep asking question after question. Maybe other people don't complain either so they think everything is hunky dory and nobody has issues with their supplies

I definitely agree that the tube feeding equipment causes more stress, don't even get me started on night feed alarms.

I was thinking Velcro, good to know others have succeeded. I imagine I may have a few 'prototypes' along the way. ( please don't laugh at my excess use of '' in post am feeling rather animated by all this).

OP posts:

bigbluebus · 05/03/2012 18:30

I'd like to say "it gets better" ........ but then I'd be lying. I have to say I have always found the provision of feeding equipment quite stress free ... in comparison to nappy provision. orthotic shoe provision, respite, .... need I go on!
Hope you find a satisfactory solution to your problem. What did we do before velcro was invented?

ReindeerBollocks · 05/03/2012 18:47

I'm being incredibly naughty by suggesting this but can you not override your current crap dietician and just ring Nutricia themselves? If they have a record for you then they may be able to discuss your needs further and see what they can ask your dietician to do to fulfil the requirements to get you the extra equipment.

Or could you approach the GP and ask that they send over a request for the new kit to Nutricia? Sorry that they weren't more helpful.

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