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

[isitme1]

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

I have scan tomorrow and next to the hospital im at is the children's hospital. Theyssid they will see him im a+e and make sure we let them know when we will be there. .

aww poor el. Did you get it sorted? ?

X

Hello all. Ancient SN mumsnetter here, but Newbie Tubie...

DD1 has gastrostomy lined up for Monday. Has been on NG since October.

Have no clue what to expect - pre-op consultation wasn't a lot of help tbh: they seem to work on the basis they don't need to waste valuable time preparing you; they'll keep you in for 2 days post-op and that's a crash course so it's OK to send you in blind. Meh. So I have a pile of questions...

What sort of post-op care will she need? If I need to book the community nurse, I need to do it now - if we wait for discharge letters it won't get organised till it's too late.

What do I need to buy - in terms of belts or whatever?

Does all the same kit (luer syringes etc) fit the tube, or do I have to get a whole new order set up with Nutricia?

How long is recovery? School are (predictably) convinced she needs to take ages off school afterwards.

Welcome to the thread!

I would ring the cn and give them a heads up so they are prepared.

In terms of special clothing and other stuff its pretty useless imo. The only thing ive ddone is cut a small slit in his vest so the end of the peg tube doesn't just drop and most of the time its out of the way there.

She will need time off to recover. Ds had his in 2 years ago in April. Hmm he was discharged within a week I think we were treading on eggshells around him.
Make sure its swabbed before you leave.
Ds had around 8lots of antibiotics within 6 weeks of having his in! (Most were from peg infections and twice he was on 2 lots of antibiotics)

You will need non woven gauze to wipe around the site with sterile water for the first few weeks.

Hmm if ive missed anything someone else will mention it!
X

Also is she getting a peg or mic key balloon?

For peg female leur lock syringes work
When ds jad ballon it was the male ones that we would flush with.

The dietitian should set everything up for you.

Better go. Ds is starting. X

Hi Itsme - she's getting a peg. Policy here is to always peg first (I did ask...!) So the old syringes will be OK.

The dietician will set nothing up, alas - she is quite good, but shared across 3 or 4 hospitals and has delegated all the ordering to the community nursing team, who of course don't take any of the decisions so there's a bit of Chinese whispers as I discuss stuff with the dietician and then she tells me what I need and I tell the community nurses and then go to the online site and discover they are trying to send me 28 backpacks a month (yes, really...) So I have to take a fairly pro-active role. As always.

Not sure what to do with the trailing peg tube but then I haven't seen it yet. I've managed to plait the end of the NG tube into her hair for the last few months, but I'm pretty certain it won't be that long!

El had a PEG at 3 so all the luer lock syringes will fit. we have a gastrostomy nurse who saw him first to fill us in with what you do in general terms. She works in tandem with the dietician and liases with school and us. Not sure how individual LAs work tbh.

We have an emergency kit given and instructions on how to pop a catheter into the hole should the PEG come out. If the hole closes. which it does fairly rapidly, its another op to reinsert. The gastrostomy nurse is the one with all this stuff and info. We were given a pump by the hospital who did the PEG.

The hideous dangly tube we always secured with a piece of mepore tape to stop accidental pulling, it also tucks into the waistbands of trousers and skirts. You can always cut it a bit shorter but not so much as it is too short! It stayed clean and uninfected for about a year before getting gunky and infected. We use buddy buttons as they are brilliant for keeping the area clean and minimising infections. Most infections can be cleared up with some stuff the nurse gives you (anti inflammatory) and chloremphenicol eye ointment over the counter and we rarely resort to systemic antibiotics.

The nurse should tell you about rotating it recularly to stop it embedding. Also some (?) silver nitrate to stop overgrowth. All sounds scary but its easy once you get going.

You can buy belts to cover the peg and protect it from rubbing on clothes. You can also get a lycra tube which does the job very cheaply and on prescription. Sorry dont know the name of it. You can get gastrostomy vests from rackety which have a tube opening but a bit expensive. Easier to cut out a section of a normal vest, but it all depends on how active the child is.

In hospital its quite uncomfortable for a bit so make sure your DD is topped up with regular calpol. Take in favourite books and a portable DVD player. They keep the PEG 'dry' for a bit and slowly give water and then formula via a pump. Once it is all tolerated you go home

El never tolerated formula well so we blend food and put it down the tube, initially the PEG, but now his mik key button. But thats a whole different story

It sounds a bit like getting your ears pierced. Only more so. :D

Sneeze has give some good advice.

We see gastros tomorrow.
Dietitian thinks it's something like crohns or ibd.

Got scan tomorrow. Dh cant come unless he does 15hour shift stood up :(
I would rather go by myself than ask him to do that again. He did it last week and he was fucked.

R4d how old is your dd? We didn't go down ng route. Straight to peg for us.

X

My DD is 10. She doesn't have the most reliable appetite anyway, but she has periodic hospital stays due to seizures and each time she comes out she's lost a bit of weight and her food likes and dislikes have changed so it's difficult to feed her up again. We've been worried about her weight for some time, but she started refusing all fluids in October (and by that I mean the only way to get them in has been via oral syringe and hold her nose and choke it down - 5ml at a time...) so since that she's been on NG. No sign of her changing her mind, so it's gastro on Monday.

The NG has been a right pain, but the up side is we know pumps and feeds and all that stuff already. It's just the tube logistics we have to get a handle on.

Thats what ds was like -seizures.

He has reflux plus ?? He was 18months when he got his gastrostomy due to failure to thrive due to food aversions being that bad.
Hes now forever constipated plus blood in aspiration and in his poo. According to his consultant thats ok. According to another its not ( which we all know) so his consultant is off and ww have a chance for someone different to look at him.

Tube feeding awareness week starts next week.
9th feb x

Hi r3dh3d (trying to work out your name [ confused])
DS had his gastrostomy when he was 9, he has a peg (my choice). He like your DD refused food and fluids and his weight plummeted. He took quite a while to get back to school but he had other issues.
DD had a peg at 5 as she has a poorly repaired cleft palate and inhalation was a concern. She was in hospital for two nights and back to school the following week.
Does your daughter go to a Special School as they should be experienced in gastrostomy care. Seriously they are easy peasy once you get into the swing, good luck.

Giddy wow back to work you are either brave, mad or broke Hope Elibean is OK bloody seizures hope it is just a blip. Love to Alex

DGD hope scan went OK and your visit to A and E was productive.

Annabel peeved today no school blood tests, infusion and gastro appt.

XX

Scan in around an hour.

ds has been canulated and is nil by mouth just in case they want a scope.
Hes most likely staying in
good thing the hospitals are connected! !

Didn't get to go to scan.

Ds is ill. He's been admitted to hospital and is on iv fluids and nil by mouth just in case he has to go to theatre for a scope

hes been given another med beginning with c that lines the stomach to help recovery

Oh no. Some hand holding and virtual hugs, I hope they are able to get to the bottom of it xx wishing him a speedy recovery

Seizures were a false alarm, thank god. But still going to run it by his neuro dr when we see her in feb.
I think r3dh3d is redhead ?? That's how I'm reading her anyway ??
So welcome r3dh3d DS1 is 5, he had a peg at 3 when his weight just plummeted from viruses from nursery and not eating.
We were 5 days in Leeds hospital, until he could be weaned off the Iv and tolerating the feed
It was basically 5 days sobbing in bed, thankfully at that time I only had 1!

Dh had his knee OP today, he was first but got bumped to last cos he has mrsa up his nose, so he's shipped off to his mums where he can moan lol.

Aww hope he has a quick recovery too.

Ds has woke up saying mama I want egg and toast. Last night all he wanted was quavers but he's nil by mouth atm.

how are the boys?
x

Is he just to have the milk feeds?

Just did a very stupid stupid thing, was putting elli to bed and I lift him over his cot sides, but got the dangly tube between me and the side, and pulled his button out, balloon still up!! Poor thing had a little cry but ok. Managed to put another one in PDQ lol. Thank god I had a spare and had everything to hand. I must admit I'm a bit OCD when it comes to the button I make sure my emergency pack is stocked really well.
Just got to ring the gastrstomy nurse tomorrow for a new Mickey button and ng tube.

Dh is fine, but bored says it's too quiet there, told him to make the most of it, and think himself lucky to have a bit of pampering from his mum! Must admit she is a great cook and baker.

Giddy did this with poor Stef he was cross but got it in quickly. Just as a point of interest I always kept the spare one in the fridge as it made it stiffer to insert.You probably know this Why ng tube or am I being senile

Glad Dh is fine Lucky devil.

DGD hope all is well xxxx

Think I've finally found the right place to post this!! :)
My 5 month old daughter is currently NJ tube fed nutramigen AA milk and on meds for severe reflux and delayed gastric emptying. She is termed as failing to thrive due to her crappy weight gain..still only 12.5lbs! We are awaiting our 24hr milk study at Great Ormond Street.
I was wondering if anyone had had this done? What it entails? Basically what a 24hr stay at GOSH is like?
Thanks flowers:

Yes you have found right place. There are some potty peeps here. Sorry no advice on GOSH regarding feeding. DD now 24 only weighed 9lb at 12 months but did have a crappy heart. Overnight stays not too traumatic but suggest you take bath cleaning stuff if you stay in parents accommodation
Hopefully you will get a bed by your daughter.xx

They started his feeds this afternoon and now his peg site is leaking as hes lost a bit of weight
AND
they dont know what they are doing with him yet

Lockets my ds was along the same lines. Still is.
Im thinking 24hour milk study is them just charting what she's had at what time plus weighing nappies etc seeing how she copes.
he was/is failure to thrive too.

Reflux is horrible.

They have started a new med to help protect his stomach.

Im knackered. Been up since 5 slept at 2.30

granny I remember the old button in the fridge trick you once told us

At 5 months ds hadnt doubled his birth weight. Which was 8lb7..
I saw gastrostomy all the way. They are soo good.
X

Put the NG in to keep the hole open while I got all the stuff together.
Poor el cried for a little bit but went to sleep I gave him some calpol as it bled a bit, but he's happy this morning went to school after a good nights sleep with nanny!

Welcome Lockets, is it a milk intolerance your dd has? My friends DS has a severe milk protein allergy but didn't need a tube had loads of test, but not a GOSH.
We've been in and out of Leeds a few times, staff a quite good but need a kick up the bum on occasion, like me now!

Awww poor el.
Accidens happen. He once somehow caught his tube in between mattress and bed frame dont ask how. I dont have a clue.

Hes being sent home on mebeverine and sucralfate.
Nothing else. Mentioned crohns and he dismissed me. Wtaf.
Been sat here starving my baby and nothing.

Yehh we got new meds. 1 to line stomach and 1 to help with pain.

Rant over.

Should be going home.

Did he say why it couldn't be crohns? At least your on your way home, is he able to eat now?
How's ds2?

Gah. I hate that sort of appointment.

Yes, I'm only r3dh3d because redhead and redhed were already taken.

We've had a nightmare few days because she's been throwing up left, right and centre. From what I can work out, school nurses tried to repass her NG tube on Monday, didn't go at all well and it caused some damage to the back of her throat which led to swelling. Didn't help that I think she already had a cold/sore throat. Since then the slightest thing makes her chuck - brushing her teeth, swallowing food, swallowing meds, standing up, all sorts. And then she vomits the tube up and we can either repass the tube (and potentially make it worse) or leave it out and spend half the day trying to get one lot of meds to go down and stay down. Sigh.

Bit better today - tube is out and I'm being very unambitious and just trying to keep the minimum fluids down her to keep her alive till the op on Monday.

Re: GOSH - haven't done the milk thing (though DD1 can't have milk either fwiw) but have stayed in for a few days at a time on a couple of other wards. The problem with GOSH is that it's so central that car parking is an utter nightmare. We always go in by train and then take a cab, even if we're staying in. There's a supermarket reasonably nearby and the canteen is survivable. Because GOSH has such a lot of diverse specialisms, I found the wards were all quite different and the best thing to do is to phone the ward you are going to be staying at and ask them for the lowdown. You need to know if you are going to be able to sleep in the room with them overnight and what sort of facilities there are. I've found in the past that though they have TV in the rooms, when we were there there was virtually no TV reception so the TVs were useless - that may well be fixed now. Find out if they have wifi and whether the mobile phone reception is any good. Plus general hospital stay advice - remember to pack all your chargers. Pack PJs that are warm enough to wander about the ward in, and sensible enough that you can have a conversation with the consultant in them, if they happen to come around before you've had time to get dressed in the morning.