taadaa shiny new gastrostomy support thread no.3 tube feeding support

[isitme1]

Taaadaaaa
Welcome to the new thread! !
New and old are welcome here

R3d- I know how angry you are this happened with El, we resisted and resisted the PEG for 18 months before we were convinced to have it put in, and he did nothing but vomit after every bolus feed. We really couldn't do without it now.

I think you should try pumping for a few hours on a slow rate, like 2old suggested and gradually increase as able.
Don't forget that anaesthetic can make you feel/be sick for upto a week later.
Also the stomach has been pulled into an odd shape now so needs time to adjust into the new shape for it to work again.
It's a big thing to get your head around, and you need some support from the gastro team

2old I don't work nights now I hated them but having said that I'm woken up by the kids over night lol
Steve's knee is getting better, he keeps rolling up his trousers to see if it is still swollen and bruised lol bless, if the boys are ok I'm doing another KIT day at work tomorrow ???????? and then I'm officially back at work on Monday!

Thanks folks. sigh.

We did all the slow ramp-up in hospital. She was tolerating 300ml/h there quite happily. She is still tolerating 300ml/h, that's not the problem. The problem is that if I chuck 300mls in over an hour, then she eats something for lunch 2 hours after the feed finishes, an hour after that (ie 3 hours after the feed finished) she chucks what looks like the entire thing up again. So the stomach is OK with stuff going in, but it's not going out. It's whatchamacallit. Gastroparesis. And then if it does get into the intestine, it's leaving at the other end of the child virtually unchanged.

I can't slow the feed down too much, because of drugs logistics. The feed can only be given 2 hours before or after one of her meds. And at present we can't night feed, so we're talking bolus feeding in a fairly small time box.

Re: support from gastro team, community nurses ... . There is none. Really none. We were released from hospital with no aftercare instructions whatsoever (not even wound care) and community nurses, despite having discharge papers and being told about it weeks in advance are extremely reluctant to pick up the pieces. Repeated phoning and whingeing at them has come up with a possible appointment Wednesday, ie a week after discharge. We are going to have to be fairly self-reliant.

The thing is - afaik there are virtually no alternative feeds. The number of enteral feeds guaranteed dairy free is absolutely tiny. It took the dietician ages to find this one. The cheapest/easiest protein source with the right profile is milk protein so that's what 99% of feeds are based around. We can't just chop and change till we find something that works. I will definitely ask the dietician (when I finally track her down) but I imagine there will only be 1 or 2 alternatives and they probably will have the same problem ingredients. So, sneezecake, we may have to go the blended diet route. Really don't want to - way too much on my plate* right now and I don't even own a blender! But it looks as if it might be the only way.

Meh. So ... what is the lowdown? How does it work, in practice?

*see what I did there?

We're definitely a blended diet convert all the food magics itself into my freezer and I just defrost and plunge simples
in reality mum (aka sneeze) makes them and brings them around I also have too much stuff going on
some people blend daily what they are having for lunch/tea etc others batch cook.
as she eats I would be tempted to make her what ideally she should be eating, let her have as much as she wants orally then blend the rest and plunge it.
beware resistance from dietitians and other professionals they are not always in favor of it. there is a Facebook group. " blended diet" with lots of ideas and advice.

El a little better today just tired out so having a nana nap Al is really getting the hang of walking, where has my baby gone?

Years ago when I was a young slip of a thing we always gave children over a year old pureed food down tubes and they usually did very well.
Would give Annabel it but her diarrhoea was even worse when fed normally and lived in fear of inhalation.
Jay as Jej fed and is doing well on Survimed am reluctant to change any thing (big wuss)
It is not too much faffing about to blend, I used to do batches and freeze just as Giddy's lovely mum does (lucky girl)

Glad El is a bit better today. Where has your baby gone? you can always have another

Ha ha ha nooooooo more babies, dh would have a fit! I've thought about adopting, but again dh said no.
I must say that we only did blended diet as we were so fed up of him puking all the time, I think if he had tolerated the feed then we wouldn't have changed.
Well a rotten night for El he had I think about 4 night terrors and generally unsettled.
I've cancelled my KIT day and I'm getting a sore throat too, so this is going to be a great week.
I'm only allowing the lift in the dining room because there is nowhere else to put it,we asked if they could put it in the garage (integral) but they would only make the lift accessible and not actually make it into a usable room, so moving pipes, changing the garage door into a window, put a radiator in etc we would have to fit the bill, so we're building an extention for a new dining room, and the kids can have the lift room as a play room.

R3d could you or have your tried her with neocate?
Its a fully elemental feed, for kids with extreme cma and as its pre digested it leaves stomach at an ok rate too (supposed to be an half an hour but longest we've had is an hour and a bit) it is 1cal per ml. Ds is doing ok on it atm. He has had 3/4 different feeds and this is the only that he tolerates.
We tried the peptimen and fortini and another 2 before this.
When ds had his peg in he had almost non stop infections for nearly 2months! But im sooo grateful that hes got it in as he wouldn't have survived without it.
The first thing they put through it was diarolyte and I cried when I saw how hydrated he looked (he had obly just been wetting his nappies if they were left on all day)
it was 15oz or 15hours. Im sure the nurse understood when she saw me like that.
I did try ds on bd but he was still pretty sickly and then I thought we should get his major problems out of the way first.

Giddy its this bloody weather!! Wtf is it doing?

R3dh3d. Go to 'Blended Diet UK'. A Facebook page. There are so many people there who will be able to relate to your precise problem wrt the different feeds and gastro paresis etc. we are on it and have had so much advice and support. It's a lot to take on where you are now so I won't push it. Most BDers come to it after months of vomiting and reflux on formula where the mechanics of the tube are under control.

Stay here too please but I don't know much about slow emptying. Does the drug domperidome help? Or there is an antibiotic that helps?

It sounds like the feed is just not getting absorbed if it is sitting there or coming out unchanged. We find this with formula too. El has to have it at school (changing soon we hope) and if we draw back at 3.30 it's still sitting there. If your DD had no problems digesting food pre gastrostomy she will again, even if you do have to go down the BD route.

20ld. Totally agree. If it ain't broke etc . Annabel and jay looked healthy and weren't puking so formula can suit some kids. The ones on fb BD page are mostly there from desperation as it hasn't suited their child. It's also very rewarding to 'feed' a child healthy food.

Hi giddy some salmon and watercress quiche is about to magic itself into your freezer.

Xposted with isitme. It's gloriously sunny here today! Oh, now it's raining, and sunny . Having to dodge the washing machine on when the sun comes out because of the solar panels.

Surprisingly sunny and rainy here too, lovely rainbow tho!
Salmon and watercress sounds very posh for you ma!

Erythromycin and metaclopramide are supposed to help with gut emptying but not sure about metaclopramide with young people think domeridome is a substitute

Just to add to Giddy' wise words, I think metoclopramide should not be given to people with seizures but I may be wrong I am a silly old fart. Jay has domperidone 4X a day.

Busy Sunday as usual bowel washout, infusion and worst of all for Annabel hairwash and nail cutting Thanks SS's for the healthy child bless her

Weather here windy and gloomy. Haven't ventured to sea front the devastation upsets me and it is nowhere as bad as the SW

XX

Yes, H had domperidone as a baby (she had fairly fierce reflux so it was the standard domperidone/ranatadine combo). I'll add that to the list of Things To Ask The Dietician If And When I Catch Her.

I suppose my worry with BD would be that it's too soon - the last thing I want to do is clog the tube due to incompetent blending and then have to replace it before it's healed. On that basis it would be best to wait till 6 weeks. If we can survive 6 weeks of dire rear. In the meantime I might try some probiotics, & jigger around with the limited feed options available. I could put a call in to the metabolic dietician at GOSH and see what they suggest. They're good on dairy-free stuff, all the firms send them samples so they know what's on the market.

General BD question: do you ever feed overnight? I've been googling obsessively a bit, and it seems it's not advised because the food isn't sterile to start with so will go off on the stand sooner than a bag of feed. Is this generally accepted, ie is it basically a bolus feeding method?

I have done an overnight feed and it was fine. I wouldn't risk eggs, meat chicken, rice and so on but in an attempt to aid sleep I made a concoction of cherry juice, (from real cherries) lettuce juice, almonds, goats milk and oats as they are all supposed to promote sleep......which it didn't!!! But I don't regard anything there as a bacterial risk. The concoction was made up in a clean environment, it went into sterile bags, frozen immediately, defrosted in a fridge and given with a new giving set. I can't see anywhere along that time line where bacteria would flourish? Answers on a postcard please .

I think you would have to be exceptionally unaware of basic hygiene to contaminate food, though this is what some dieticians will tell you, like we all feed our children salmonella contaminated foods. You can do a cheap online hygiene course if you are unsure of this type of thing. A pint of milk left out in a kitchen overnight is not going to be teaming with bacteria by the morning though raw chicken is another matter, so it's just a common sense thing and not be scared or intimidated.

Giddy overnight feeds el formula because it is such a faff to make up a feed but we are working to get enough calories and fluid in over the day so it is not needed. More often than not he will puke on it.

Ideally I would wait a bit for the BD though I know mums who have done it down an ng tube and started immediately the peg went in. But for a newbie I would just get used to the vagaries of the tube itself, not least where to stuff it, trousers, waistband??? If the dire rear hasn't stopped in a few days I'd look at bd again. Everyone starts with Ella's pouches! You don't need to worry about lumps in the first ones but they re minuscule in the calorie department.

20ld. We have been fortunate here to escape all the devastation unlike a few years ago when majorly flooded so I feel for you. Hope the pier is still standing and survives to next onslaught.

Salmon and watercress not posh! Looks very green and smells fishy lol

Ds2 has bronchiolitis again :(
His temp was 39.9 last night, came down with calpol and left him.in vest it was cold in here last night too.

To top it off I fell last night :(
Really hurt foot :(
So I cant takw him to drs unless I can get a lift.
There's not much hr can do anyway but if needed would do

r3d how is she doing x

Oh isitme, be careful! Sorry about ds2 Alex is just starting with the dreaded cough that El had, he's had all of 10 minutes nap before waking up coughing.
El has gone to school, for half a day to ease him back in.
Steve is off painting the banister, I may go wallpaper shopping

When will the sun come out and stay out?!?!
Ds2 had the temp and then ds1 woke up saying 'cough be sick'

giddy its the same foot I hurt when I was pg with ds1.
Exactly same place.
I dread getting up cant walk on iy that long

this bloody weather is making us all ill!!

Ooo wallpaper shopping theres
homebase had some nice stuff in

I won't be going anywhere today, picked El up early from school, he's still not well been puking again he's been so well over the weekend I thought he would be ok. When his 1:1 told me I just felt like the worst mum ever.
He's asleep on the sofa now hopefully he'll get a good rest.
It's sunny here at the moment just a bit chilly still. It won't be long until spring is here, my snow drops have sprouted which always gives me hope

Hey all;

H went back to school today - seems to have slept through most of it though. Barfing is reduced if we're careful, but she's not taking much orally at all which means her formula intake isn't enough. And we can't put the formula up because of the dire rear (I don't think we could survive it getting any direr tbh ) Still no word from the dietician, obviously.

Sorry to hear about your foot, isitme - I was going to say something dumb like "it never rains but it pours" but given the weather that seems redundant.

Have you thought of probiotic capsules. Don't think they have dairy in them and it might help with the rear problem? Will she eat bananas? They're pretty good to help with runny poo.

This is the brilliance of BD you can tailor the diet to your child's needs and it's almost impossible for them to get dehydrated as they can't refuse! At least H has gone back to school and the puking is slowing down. If she has the dangley tube I would secure it near the hole with a bit of tape as it's a nightmare for getting caught in clothing.

Yes, she has the dangly tube, the surgeons helpfully taped it near the hole so I'm continuing that. It's then looped back up and the end goes under her bra top to keep it out of the way. I've made a little fleece tube thing to cover the end where the ports are because they are massive and look really uncomfortable if you eg lie on them by accident. I should probably do another for the clip.

I have already ordered probiotics ha ha, just waiting for them to arrive. Though again I'm a bit nervous about putting a pile of bacteria into her stomach while there's an open wound in it; not sure who would know if that's OK or not.

Plenty of mums on the Fb BD page use probiotics in their blends especially after bowel or gastric problems. I'm sure they're not dangerous if they are for oral consumption. The end is definitely uncomfortable if you lay on it. We used to touch it into els trousers at the front where it seemed ok though probably not hygienic but nowhere else as he doesn't wear a bra! Vile thing.

Ds isnt too fussed about lying on it
he was really ill yesterday temp was over 39 all day.
Took him to gp anf he said
hes not ill
well arsehole check his temp!
He did with a dirty probe end and checked his ears with a dirty end too isnt that against like some type of policy? I did mention it to him and he ignored me. I knew ds was ill and needes seeing too.

He checked ds2 and he is wheezy like I said he was.
He said oh I hope he doesnt get ashtma.

ds 1 is throwing a tantrum must go

He said about ds1
oh hes not ill hes seen too many drs for no reason.
I kept my mouth shut as dad was with me and dad for some strange reason respects the gp.
Its not no reason. He has fucking gastric problems you idiot. Read his bloody notes! They send letters to gp all tje time about ds1 and he doesnt read them so he thinks its all unnecessary. He said im not happy with his omeperzole
well yh your not as it costs 150 a bottle for 2 weeka but its tough he needs it and his gastric drs (even rhe the one in Sheffield) said dont stop. He was trying to convince dad of all side effects.

Rant almost over.

Ds2 chest is prettt bad hes wheezy.
We have to see genetics at hosp as both are 'ill' and ds2jas worse ashtma and eeczema than1 so does that mean dc3 will too??

Phew.

How is everyone?

We're all ok, hang on will post later

Trying to get a minute to do anything in this place is just impossible!
El went back to school yesterday, feeling much better, he is sleeping really well (for him) and just in time for half term to mess it all up again!!
Al and I went to a friends house for a coffee morning for special mums one of my friends who I've known for a while, (her daughter and El have very similar CP) husband has left her. I'm so sad for her she is just the loveliest person ever, and her daughter is just the cutest little thing you have ever seen her smile can light up the darkest of rooms! And to make it worse, the dad doesn't want anything to do with her, even said to that she should stop wasting her money on alternative/complementary therapies for their daughter. (WTAF)

I am so disgusted the way your GP has been speaking to you isitme, no one has the right to say that to anyone even if they think it, they are in a professional position and they should maintain that status, no matter of their own opinions.
Bloody hell I not keen on treating certain conditions, but I don't go around telling them what I think of them!!

Seriously I would complain, I wonder if he is being so rude to you so you change practices and stop costing 'his' practice money. What a knob.

Best go Al trying to wake El up love to all x