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gastrostomy- tube feeding... Help

(48 Posts)
fazsaeed Thu 16-Feb-12 21:36:55

just been told ds 17 months old will have gtube put in on Monday.
Has anyone had any experiences with it, I'm really worries for him
Thanks

KalSkirata Thu 16-Feb-12 21:42:49

dd had a G-tube in 3 years ago. Its wonderful. Medication takes seconds rather than hours and she now gets enough nutrition. She can still eat but its supplemented with tube feeds.

Do you know what sort of G-tube? PEG or button? The op is the same but IMO a button is easier. dd had a PEG to start with then switched to a button. We give her bolus feeds - fill a 60 ml syringe and put it in, not a pump.
The op itself is straight forward and you generally stay in hospital 5 days. Nurses will show you how to keep the site clean, how to attach the feeding tube to the button or syringe to the PEG etc etc
A PEG cannot come out by accdent (its held in with a disc inside the stomach) but a button can fall out so you'll be taught how to replace it.

Anything else?

fazsaeed Thu 16-Feb-12 22:18:41

I've been told he will be in atleast 3 weeks.
He's really weak ATM due to reflux.
How did you manage at first?
Hes having ph probe done and camera down him too.
He's petrified of drs as he's been so many times with this reflux.
Thank you for getting back to me

KalSkirata Thu 16-Feb-12 22:30:52

hey always say longer than actually is so hopefully you'll be out quicker. Is he having a fundoplication at the same time as G-tubes can make reflux worse. dd has had 4 PH probes but thankfully has no reflux despite the G-tube and her medical condition.

It was scary at first. Her perfect tummy marred by this thing. And I was scared of hurting her but we got used to it quickly. And seeing her put on weight and become hydrated was amazing. Before the tube she was managing 200 ml's liquid a day (1000 ml minimum was needed) as she finds swallowing hard (she has severe cerebral palsy). Cleaning it made me a bit sqeamish (there's a difference between PEG and button for management). We always use tea tree and lavender oil in the water we use to clean the site and in 3 years she has never had an infection or soreness.
Now she has a button its changed every 3 months by the feeding nurse. I can do it, I just dont like too grin but she started with a PEG for 4 months I think.

To be honest you get used to it quickly. Its your new normal. And you soon get a feel to how much liquid at once - dd can only tolerate 100 ml's at once or she pukes.

Will he still eat orally?

fazsaeed Thu 16-Feb-12 22:47:35

Only just taking one or 2 bites at meals.
Lost 1kg in a week.

Clothes wise what's better at the start?
Half body vests or normal full?
Rompers or pants?
I don't want to be ill prepared seen as I've got notice.

Thanks

KalSkirata Fri 17-Feb-12 09:24:25

half vest because you will need access to his tummy. But then I'm guessing he can use his hands? (dd cant cos of her CP) so a full vest might stop him fiddlin with it.
hospitals are hot so he will probably be in jammies at first

fazsaeed Fri 17-Feb-12 12:48:44

The all in one pjs? I might get him a mix...
Can u use my broadband dongle in hosp?
I just feel Like arghhh
He has been an ill baby; meningitis w septicaemia and constant infections but never a tube in him like this...

KateShmate Fri 17-Feb-12 13:30:22

Hey Faz - my DD (2.6) was fitted with a PEG only last week - we aren't pro's just yet, so I apologise if I get anything wrong!
DD had a PEG fitted and is going back to have a button fitted in the next few months - depending on how we get on with the PEG I think.
DD's operation was very very last minute - she was admitted to hospital after being ill, a consultant (not her consultant) said that we ought to think about having a PEG fitted. DD's consultant came home from holiday and rang us to talk about how she was (On Sunday), when he heard how bad it was he said that he wanted us to come in on the Tuesday to have a PEG fitted. We were actually really relieved as DD was becoming so ill; but also really scared as we had no idea what would happen.
KalSkirata You sound like a Pro at these things! DD had hers fitted early tuesday morning and was out thursday afternoon - from what you've said, this seems too quickly!? She's absolutely fine, but they were very quick to 'teach us the basics' and send us on our way.
Anyway, DD's has gone perfectly so far - she has a continuous pump throughout the night, and no feeds in the daytime. It has worked amazingly for us and already DD is clearly improving!
In the daytime, we put DD back into all-in-one vests, just to stop her being able to touch it, or have it pulled or anything (we're still a bit nervous around it!).
Kal We have been told that it is okay to take DD swimming, but to put a large adhesive bandage over the top. Have you taken your DD swimming, and has it all been okay? Im sure it will be absolutely fine, just a bit worried if anything gets in it?
Goodluck Faz

KalSkirata Fri 17-Feb-12 13:50:55

dd has been for hydrotherapy but we dont put anything over the button. She wears a one peice cozzie. It doesnt matter if some water gets into the hole. Its the stomach. Its not sterile plus kids swallow pool water all the time.

We tried the pump once. The tube undid itself from the button and made a large pool of feed before I noticed. In her bed. But she just has feeds as a supplement so I do 150mls for breakfast, normal snack, lunch, snack, tea then 150mls just before bed.
Its possible dd was in for 5 days because she is very severely physically disabled. Or maybe they just liked our company grin

fazsaeed Fri 17-Feb-12 14:23:44

The consultant said he wanted him in for a while as he needs food and speech therapists involved and ENT specialists too. They getting his nutrition up to scratch then sort him our with normal food as he refuses it and eats very lil all the time.
Do any of you work? Just curious.
They want to do a few tests on him too. Just want him to be able to enjoy food but it won't happen!!!

Thank you for the help. Means a lot
X

fazsaeed Fri 17-Feb-12 14:25:57

Kal
I'm not being rude but how do you cope? Emotionally? I'm a big softy with ds as he's been ill in the past and when ever he's Ill or in hosp I just feel so down for him.
Please don't take that the wrong way.
X

KalSkirata Fri 17-Feb-12 16:35:45

DH works part time - school hours as Im a wheelchair user and unable to lift dd or change her pad etc
Emotionally? There's no choice. She is in and out of hospital and she isnt expected to live till 10 You have to get on with it. I do feel down for her. She is bright but her body doesnt move so she sees other kids running and playing and she has never even held a toy. Its a pile of shit but you take it day by day. The G-tube is the least of what we have to do and has made life much much easier.

Do you know why your lad wont eat?

fazsaeed Fri 17-Feb-12 23:13:57

I'm really sorry. I feel very inconsiderate now.

We know he has problems eating due to severe reflux but further tests are going to be done to check everything in uper part of body and tummy.
He was so hungry today. We were picking some stuff up for hosp so we went to pizza hut ( he used to love pizza) and he took a bite of food and chucked it. He just couldn't eat it.
I gave variety of food but nope hardly ate.
He associates food with pain. His worst time with pain was when we was weaning him so he won't eat food off a spoon.
Very hard child to feed.

I hope your dc is in good health
X

KalSkirata Sat 18-Feb-12 12:46:33

Poor little lad. The G-tube will make him feel so much better. There are various feed types so if one makes him puke (some are just sugar plus vitamins. yuck), then try others.
Once we were confident we switched to a blenderised diet (the dieticians get annoyed by this)

fazsaeed Sat 18-Feb-12 13:37:59

Somedays he will eat others nothing at all
Been such a struggle feeding wise since birth.

KalSkirata Sat 18-Feb-12 16:18:51

do they have any idea why?

fazsaeed Sat 18-Feb-12 19:12:37

I tried bf at birth but he kept getting rash so I stopped. We had problems witH him latching on and midwife checked his mouth and said he had a problem sucking but left it at that. I told dr and hv but it didn't concern them.
It takes him a long time to drink 1oz.
They going to do all the tests that they can do to figure out why it's got that bad. He was 8lb+ baby at birth and in 17 months only just 11lb heavier.
It's just such a Shame.
When he's hungry he can hardly eat, really horrible to watch.
After they have sorted nutrition out via gtube they getting diff people in to help.
Our gp didn't want us to go to this hosp so if it wasnt for the phone call I got I wouldn't have got the appointment the consultant is brilliant.
The staff nurse was really nice too. We will be by ourselves as it's nearly 2 hour drive from home

KateShmate Sat 18-Feb-12 20:05:17

I get you Kal - thanks, I think of it as a wound and worry about it not being sterile water.
Am so sorry to hear about your DD; it must be hard for you all. Glad to hear that the tube has helped considerably though.
I think we've been lucky with the pump - have had no spillages or leaks yet... touch wood! I'm still working on fashioning something incase of any leakages because I can imagine what a horrible mess it would be!

Fazsaeed Your poor DS, must be hard seeing him go through all that - especially when he's so hungry etc; its sometimes frustrating when they are too young to understand. Im sure that everything will improve after the peg is fitted.
I don't work as DD is one of triplets, and we also have 2 older girls too - would be pointless putting them into full time childcare. DD does go to nursery though - she hadn't been for a good 6 weeks because she was too weak. They are being extremely annoying about the whole PEG thing though - DD is more than well enough to go back, but her Key Worker needs to do some course before she can go back - so that they can 'care for her properly'. Ridiculous seeing as she doesn't use the PEG in the daytime, it isn't even seen until bedtime!

KalSkirata Sat 18-Feb-12 20:06:01

which hospital?
Hopefully once he is nutritionally strong you will find out what the issue is. Did the PH probe show bad reflux?

summerskye Sat 18-Feb-12 21:34:27

hello, Im reading this with great interest. My 3.4 year old id due to have a g tube next month.

She has eosinophilic eosophagitis, but other digestive issues too.

She has had an ng tube on and off since she was born, so im hoping the g tube is a way forward!

KalSkirata Sat 18-Feb-12 21:39:26

what an awful condition. I'm so sorry. To me the G tube saved my daughters life. I love it. Its a straight forward op and straight forward care although if the button falls out and you cant replace it you do get blue lighted to hospital as the hole closes up quickly. DD though that ambulance ride was the best thing since sliced bread!

fazsaeed Sat 18-Feb-12 22:54:48

Aww bless
My cousins daughter was prem. She had really bad reflux and she was offered this but she refused and is eating too.
To me this procedure will help us understand why he's like this.
He was healthy birth weight and now he looks like a starving child from a 3rd world country.

My nephew has reflux but he's the opposite of ds. He's nice weight, feeds ok most of the time.
When ds and him together it just seems so weird there's 5 months between them and wow what a difference. When he's eating you just think wow I wish ds would eat like that.

This feeling is a whole new feeling for me.
I think it's going to theatre bit with no tubes and coming out with a few that's playing me right now. Last night I hardly slept thinking about it.
Nothing I can do really.

How is your dd?
Do you only have 1 child?
I would love more but once ds sorted.

fazsaeed Sat 18-Feb-12 22:57:18

He's being seen at Sheffield children's hospital
Which so far is brilliant.

I just hope it helps him.

fazsaeed Sun 19-Feb-12 08:29:33

Ooo that's what I wanted to ask...
How long did it take them in theatre putting it in?

KalSkirata Sun 19-Feb-12 10:47:42

I think they were in theatre about 2 hours. Maybe less. I have 4 children so have juggled the other 3 with dd's constant hospital admissions (she has epilepsy too)
I took a picture of dd's smooth perfect tummy before she went in and I did have a small grieve. And it was also something that made her 'more' disabled IYSWIM and 'more' dependant on technology to survive
But 3 years on I know it saved her life. And we never have medicine issue. It goes down the tube. Takes seconds.
And, if we are out and about we can bring a whole cafe to a halt by doing a tube feed - we bolus feed water and her feed (bolus feeding is when you give X amount via syringe at one time. You attatch the tube to the button (PEGS already have a tube. Its a blardy nuisance) Then a 60 ml syringe which you fill with water/feed and release the catch and hold up in the air so gravity lets the liquid run into the tum)

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