Tube feeding pumps/ equipment

[tooloudhere]

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.

We are just getting into the shoes and insert amongst other things, he is also deaf/blind so have plenty of equipment there too! I find it all quite stressful, things are difficult enough for these kids without piddling us around over things but I have a feeling it will continue.

I have thought of ringing Nutricia, I was going to ask if I could buy stuff myself but I can't afford to commit to that in reality. I will ring them tomorrow and see what they say. Oh and our gp won't be any use as you guessed it, they are crap!

You shouldn't have to buy the stuff yourself. Ask the dietician who made the decision that she can only supply you with X Y Z equipment and file a complaint to them.
I have recently been doing some voluntary work as a parent advisor working with PCTs and Hospital Trusts and the lack of knowledge of the people paid to arrange these contracts is astounding. They often do not know the basics of how a service works and have no idea about how their decisions affect families like ours. And the sad thing is, if they researched what we needed properly instead of giving us what they think we need they might actually save money.

Well, I have rang Nutricia and I can buy a bag and a go frame to fit in it. However I need 500 reservoirs or filable bags with the tubing attached to make it work which I can't get from the dieticians. Brick wall anyone?

I am going to have a word with our main consultant who is fab when we go next week as he is good at getting things done, if that doesn't get anywhere I will think about complaining as Bigbluebus says. This may sound pathetic but we have a lot going on with him at the moment and not sure ave energy for a battle.

tooloud I hope your consultant can pull some strings. Do you have a Community Paediatric Nurse - they are generally more 'hands on' and might be able to point you to a solution. You really shouldn't have to be paying for any of that stuff, but at least the frame and bag will be a one off - but pointless if the PCT won't fund the correct monthly supplies.
It doesn't sound pathetic to say that you are not sure if you have the energy to fight for this. I know how you feel, DD is 17 now, so we have had many 'battles' for what probably seem like trivial things compared to trying to deal with our DCs health problems, but if it will make your life easier then it is a battle worth fighting.Might just be worth one strongly worded letter to the right person. If not ......back to Plan B ... Velcro!
Good luck with everything that is going on with your DS - it is really difficult when they are so young....so many appointments and professionals involved. It does get easier as they get older. Keep posting on here if there is anything we can help with.

I second trying the consultant and community nurses. As your DS feeds for so much of his day, they need to think about his quality of life and that means being able to go out easily. When he starts nursery or school I think that they will have to provide something more portable, as they are unlikely to just "make do".

Bless, your all so nice, is this really MN?

We do have a nurse but probably not for much longer, wonder whether the OT may be helpful too. I counted up the other day that he has 21 people involved in his care so you'd think one of them would be able to sort it!

I am glad to hear that it gets a bit less intense as they get older, I can't imagine this number of appointments continuing for 17 years think i'd need to buy a vineyard to cope!

X

Yes it is MN - we're much nicer on the SN topics!!!

I can remember counting up all of DS's professionals at one point - I think it was a similar number to you. It got better for us; and hopefully it will for you and your ds too.

You can always come on here if you have any questions, a moan or just a chat. Between us we have many years of experience under our belt and are happy to help. I just wish there had been something similar when I was starting out!

THe nice man from Nutricia has just delivered umpteen boxes (30) so I need to find somewhere to put them all!!

Good grief starfish. How many month's supply is that? I winge at getting 4 boxes of feed and 1 box of giving sets in addition to 3 very large nappy boxes. Do you have an extension just for storage?

We get 8 boxes feed powder sachets, 2 boxes giving sets, 3 boxes of huge useless reservoirs and some syringes so quite away off 30.

Most kids have toys and books on their toyshelves, ds has all of the above in his shelves. Until I did this they had to go in attic, we are already at bursting point in our house.

Has anyone done a holiday abroad with tube feeding. We have only done uk so far as not brave enough.

Yes tooloudhere we have been abroad DS was fed intravenously it was a nerve racking to say the least. We found flying easier than motoring as the airlines were so helpful and the feed supplier arranged cold boxes for us to carry the food in and we had no weight restrictions
We now have 2 LO's on milk feeds and we just throw everything in the car and go through the tunnel and then get to our destination as quickly as possible. It's hard work but worth it.
BTW as an offshoot how do you cope with your DS's deafblindness I find it very hard and feel at a loss to give him a good quality of life.

I may have exaggerated a bit, it's only 21!!

But bear in mind ds is 13 so has a bigger amount of feed- we have :
140 (200ml) bottles of peptamen;
56 (200ml) bottles of fortisip.

60 top fill reservoirs

30 x 500ml reservoirs,
30 pack sets.
38 60ml enteral dispensers
38 10ml enteral dispensers
38 5ml enteral dispensers,
mic-key extensions
sanicloths.

Oh and the ordinary syringes for doing his balloon.

We have extra enteral dispensers thos time for a school residential where they will use them as "single use" rather than re-using as we do but I haven't had gloves (get a box once in a blue moon) ph paper, a spare button or the full amount of sanicloths this time.

There are also incontinece products.

If you think this is a lot - we always miss a delivery when we are away in august and I usually find the best thing to do is have a double delivery the month before!! We tend to take the supplies with us, basically we dont trust homeward not to mess up a holiday delivery. (voice of experience)

Alright starfishmummy I am going to beat you nenenene
180 bags 500mls Nutrison
60 single giving sets
60 double giving sets
30 bottles 500mls sterile water
100 water pods
100 straws for above
900 10 ml syringes
120 10 ml syringes
plus what really drives me potty is 3 months of incontinence pads
I am cheating it is for 2 DC's
Have fun

Wow, not looking forward to him needing all that stuff! Do you still test a button for ph? When ds had gastrostomy we were told no longer necessary eek if we should be testing. There have been a few times it has had a little knock so have drawn back on syringe to check for stomach contents.

2old, he is still very little so strategys all still in progress. Quality of life is a biggy here as I feel his is not great at the moment, he has quite a few things going on and he has a fair bit of pain that we think is not well controlled. Aided he has some hearing, and with glasses he has some vision but we find communication really hard and he is so frustrated. He doesn't pick up gestures and signing easily from his vision and doesn't get good enough sound through hearing to speak, it is very hard. We have been doing hand over hand signing with some success just recently so we will see he that goes. Oh and hats off to you having two with extra needs, I need to ask you for tips.

x

Thanks tooloud, I am very interested especially pain, DS 13 has also CP. Have thought his pain was due to spasms he would cry for hours but he has been diagnosed with neuropathic pain. He is now taking a cocktail of drugs ?seem to be working. He has no hearing and minimal sight. Another thing we have seen if bored he zones out. We do hand over hand and on body sign language (Caanan Barrie) Not doing too badly.I think the pain is the biggest worry ATM

Trouble is we have no clue what is causing the pain, but like you it goes on for hours, high pitched screaming that nothing helps. He doesn't have cp though.

We have problems getting through to him in as he's not always bothered,not zoning out but I suppose he may do that when older. I think your body can compensate for one sense quite well but two or more is really tricky.

I dance with him and pat the rythymn out on his back, also hold his hands on speakers so he can feel the music and he bounces around to that. He is very touch sensitive though and won't let other people touch him, sometimes not even his dad. We even have times where he pulls away from me, he also hits out at me mainly when he is in pain I suppose he is cross I can't fix him. I swear he can tell the hands of a dr immediately.

thanks for your reply. Our DS was adopted by us at 5 and from what we could gather he did have periods of extreme distress reasons unknown. Must admit he always appeared he was tactile defensive but does enjoy touch and massage from familiar people IF he was not in pain.Do you know why your DS is deafblind, DS has pneumococcal meningitis @ 8months. Can't say too much as he is a "protected child" Good luck I am here if you want me but am very interested in your DS especially the pain aspect.

Forgot DC's have PEJ and PEGs not Mickey's

Tooloud, we have done uk holidays and are going on our first trip abroad in the summer. The airline has been very accommodating and are giving us the medical allowance for free. We have to pack the bag and the plastic stand as we aren't sure when we will feed, but we are taking a bag of premixed feed (nutrini double cal/extra fibre 500 ml bag) for every day and enough giving sets too.

We get eight boxes of eight feeds and one box of giving sets which always leaves me with too much feed. I have cancelled the last two deliveries of feed but not giving sets. We also bolus calogen too which adds in the much needed calories. Glad Nutricia were able to help you but please find someone to change the prescription rather than you paying for it privately as things may change long term and you may be stuck paying for any changes.

Yikes 2old!!

Too loud. with regard to the ph testing, er, we usually only do it when we change the button or if we are worried because the button has had a tug or something happening to it. I'm not sure how often we should do it tbh.....initially we were told to do it every feed, but then we were sent back to see the surgeon as we were drawing blood back and he said there was no need to do it at all (cue CCN having forty fits). I think the protocol in our area is currently once a week, but don't quote me!

He was has been this way since birth but some things do appear to have deteriated, reason as yet undetermined the genetic tests are still being done.

I am pleased to hear holidays abroad have been done successfully I think a bit of sun would be good for us all here.

With regards to the ph testing everyone in our area seems agreed on the never test approach. I did find it unnerving to start with as they drum it in with the ng to aspirate, it felt wrong to set up a feed without doing so however I don't miss syringes and bits of paper with stomach acid though.

x

DD has a mic-key and we only test when we change the button or if I know it has been given a hard tug too. Have never been advised to test it at any other time.
tooloud Your DS probably can sense doctors at 50 paces! My DD is registered blind, has a moderate hearing loss and severe cognitive impairment, but before she was tube fed, she would immediately sense someone trying to feed her who had not done it before and would clamp her mouth shut. As soon as someone who knew her took over the feeding she would eat the food immediately!!! You can never tell just how much they are aware of and taking in!

That's interesting regarding the feeding at not letting anyone else do it and knowing, when I said he doesn't let other people touch him I meant others ie not me. He is clamped to me most of the day, you can tell if he is uncertain of anything/ body as he almost melts to me he is that close. He does hit out at me if he's hurting or really cross.

When he was last in theatre we were called to get him in recovery and whilst we were waiting to get through to him I could hear him screaming. I practically burst through to get him he was in the cot curled up in a ball screaming , all I had to do was lay my hand on his back and he relaxed and was asleep in under a minute. The nurses were amazed, they were apologising saying they had tried everything to comfort him but he wasn't having it, they couldn't believe he knew it was my hand. My hand did have to stay on his back for the next three hours though as soon as I took it off he woke and screamed again, made the walk back to the ward interesting as he had to stay in the cot and be pushed back with me jiggling through doors etc to stay there!

too loud Bless your DS - there's no doubt he loves his mum 110% then.
DD would always go to anyone who would give her a cuddle - just as well really as I went back to work part time when she was 6 mths old and employed a nanny!! Had to give up work when she started school full time though as it was impossible to get suitable childcare for the split hours needed.
The feeding caused no end of problems though when she went into respite or we had carers in to the house as they just couldn't get enough food and drink into her. School was ok as she had the same 2 lunchtime people feeding her for years. They had no choice, they quickly worked out they couldn't just put anyone with DD to feed her. Its great to see our DCs asserting their authority!!!
Hopefully you will find people with whom your DS can build a trusting relationship, so that you can have an occasional break from being attached to him all the time. We did used to call DD "limpet" when she was little though as she always wanted to be attached to someone and her pitiful almost 'cat-like' cry meant it was heartbreaking to listen to her being unhappy.
I'm sure she'd still love to sit on my knee and be cuddled now - just a bit too big at 17 - so have to make do with holding hands.

Nothing about tube feeding but deafblindness. When DS requires surgery I take his small quilt sprayed with my perfume and he is given it to hold until I am with him and it seems to comfort him.
x