DS having a gastrostomy needs advice please

[sneezecake]

After 6 months of no weight gain and feeding difficulties which have finally driven me mad, we have been referred for DS to have a G tube.
We have had the nurse come round and explain what happens and the training on the feed pump, just need the op now.

But what do I need to expect? pain, discomefort? will calpol and brufen be ok?
how soon can we start using it?
Does it get caught on clothes?, which are the best clothes to wear?
I know I should have asked the nurse all this but it was all a bit daunting and everything went out of my head!
Also any little pearls of wisdom would be great to hear!

My Dd has a Mini button, is he having a peg fitted? Dd had complications so had one night of morphine, we were home the next day even with the added problems. We used Dds button the day after her op, they like to see that everything is working and the child is tolerating feeds before they discharge.

My Dd is in nappies so I made popper vests with holes and a flap so I didn't have to undress her to use it but other than that looser clothes would probably be more comfortable immediately post op.

I hope that helps, Dds has been a life saver, we love her button :)

I have beed told he is having a Fricker ???Peg fitted for the first year, then having either a mickey or a mini button.

DS is still in nappies, but is too big for the popper vests, how did you make them? I have looked into buying them but at £12 per vest they are not cheep! I've also looked into tummy tunnels but not sure if they are a good idea.

We have resisted DS having one for 3 years but he has really slid off the chart, I think once the op is out of the was we are really going to like it too !

Oh Dd fitted into toddler vests until very recently, she's quite tiddly. Dd had a button straight away so I'm not sure about pegs but I think the tubes are very soft so tops/jumpers shouldn't be uncomfortable. One thing to watch is the position of straps/vests etc in wheelchairs/carseats/trikes, they might rub or pull so need to be moved.

Dd wears regular vests now and tights/pants over her nappy so I can tuck them in, some people make popper type vests using pants and vests and sewing poppers or velcro around the waist so you can join them together, I keep meaning to give that a go.

thats a great idea!! I will be giving that a go cheers

DD had a gastrostomy tube fitted just over 4 yrs ago. We went expecting to stay in for a few days but she actually came home on the same day as the op - once they were happy the tube was working properly and she was tolerating some feed. I think we probably gave her paracetemol but she didn't need any other pain relief. The type of tube she had was very low maintenance and just needed to be turned daily to prevent scar tissue growing over it and of course it needed to be kept clean. It was changed after 2 yrs for a MicKey button which was done as day surgery. We did find that the tube/button dug into her skin as she is sitting down in a wheelcahir most of the time but we use Alleyvyn non adhesive dressings under the button to cushion the skin.
I used to buy those special popper vests with the openings for G tubes but now just put DD in an ordinary vest and she always wears trousers over her nappy anyway - DD doesn't walk and doesn't pull at the /button however- so may be different issue for your DS.
Good luck with the op - I'm sure you won't regret it - it was one of the best decisions we have ever made for our DD and with hindsight we should have done it sooner.

ds went straight to a mickey button as he was having a fundo at the same time, pain wise i thought he was in terrible pain afterwards as he was just lying in bed screaming for hours.
tried everything, pain relief, cuddling him etc then i mentioned to the nurse that he hated lying on his back and he prefferred to sleep on his tummy and would we be allowed to flip him over, didnt know if he would be allowed as his tummy was all stitches or if he'd be too sore?
flipped him over and there was instant silence and he went straight to sleep! lol

Thanks bigbluebus, We were offered it about 18months ago and was horrified at the thought, but now I think it will be a bit of a relief to know that there is an alternative way to feeding him when he is refusing food.
I really don't want to stay in hospital for more than 1 night so I'm hoping they will let us out in the same day.
I'm worried about him pulling it especially on a night so was thinking about a longe vest and some pants.
Glittery, DS also sleeps on his tummy, but will only sleep with me (or on his grandads chair ) so I'l glad to hear that he will still be able to do that, they are looking at overnight feeding so I'm wondering about the logistics of it all.
I would prefer him to have a mickey from word go but don't think that the surgeons would agree to it, no harm in asking though !
DOes the dietitian get involved with the type of feed that is needed?
Also can you put real food down it if its thin enough? or should I just stick to the stuff they give me?

The dietician decided which feed DD had and how much. She is fed entirely on Tentrini - doesn't eat anything orally now - just has little tastes of yummy things for pleasure eg froth off cappuccino, champagne at New Year!!!
We were told to feed DD overnight when she 1st had an ng tube. This lasted 2 nights and she coughed so much we weren't sure if the tube was still in situ so we switched to day time feeding and have stuck with feeding in the day even after the gastrostomy op. This works well for both us and DD as: a) I don't get woken up by the pump bleeping at night, nor do I have to listen to the whirring of the pump on the baby monitor, b) DD gets fed in the daytime - just like the rest of us, and doesn't cough or vomit her feed as she is sitting upright in her wheelchair c) wettest nappies happen in the day so I don't have to change her at night.
The decision on whether to tube feed in the day or at night would I guess depend on what food,if any, you plan on giving him orally - if you still plan on feeding a reasonable amount by mouth then I guess you would want him to be hungry in the day so would make more sense just to top up with tube feed at night.
There is someone who posts on here who feeds her DS a normal diet down his tube but I know she has met with a lot of resistance from the professional and until recently they wouldn't allow her to do it when her DS was in hospital IIRC.
Re possibility of pulling tube out - if your DS is fed at night then the connection tube will still be accessible to him even if the peg/button is covered by vest/pants. If he yanked on this hard enough he might still be able to pull the tube out (school managed to pull DD's out when hoisting her just after her button was fitted as they forgot to disconnect first!) You only have a short time to reinsert the tube - max 2 hrs before the hole starts to close up and is too tight to put tube back in - but I guess the nurses have told you about that!!! (The 1st tube DD had was one with a bar across the inside of her tummy and would have to have been pulled very hard to come out - it didn't happen at all in 2 yrs - but now she has a balloon on the MicKey button which can come out more easily - so make sure you know how to re-insert it yourself if your DS has one with a balloon - they usually need changing every few months anyway)

theres quite a few doing the real food blended diet over on the special kids site
ds is only pump fed during the day he has 200mls of nutrini energy 3 times a day and eats orally in between too...never been known to refuse a McDonalds or a curry!

Once its healed is it painful when moving? DGS is good at rolling onto his tummy and more and more pushing himself up on his arms and moving his legs - we hope some kind of commando crawl may be starting. Will the tube make him less happy to do this do you think? He is a bit of a wimp tbh!

DS was three when he had his gastrostomy, he's 13 now so we have had plenty of practice!! Because of other complications he had to have it placed by an "open" operation not endoscopically. For the same reason it is higher up than others I have seen. It was a much bigger op with longer recovery time but it meant that they could use a different type of gastrostomy device so he didn't need a second op to change it later.

The first g-tube had dangly tubes so we just kept ds in popper vests - didn't add any holes to them, we just undid the poppers to get at the tube for feeds. We also dressed him in dungarees a lot so that there was no chance of him fiddling with it.

These days DS has one small feed in the day (early), and a big feed overnight. There was a time when I was against overnight feeding but we have always had to do some - initially it was because we couldn't get enough feeds in to the daytime (especially when he started nursery) but gradually we have found it is less intrusive into his and our lives to do most of it overnight. He does eat and drink as well, and we'd like him to eat more so it helps that he isn't constantly full from the tube feeds. He is also very adaptable; if we need to change the time of his daytime feed, or he starts his overnight feed later it doesn't matter. As long as we get the right amount into him, safely then thats fine. Downside to the overnight feed is of course the "nappy activity", but we just cope.

No advice on the crawling I'm afraid as DD doesn't do this but the stoma site shouldn't be sore once it has healed unless it becomes infected. It is more the risk of the tube being pulled out, so he would probably need to be discouraged from doing this is he is attached to a feed - also because he might get tangled in the connection tube!

I've just remembered that when DS first had his, he was at the rolling stage. He couldn't lift his head to crawl or sit so used to get from one end of the room to the other by just rapidly rolling over and over. His gastrostomy survived that!!

That is a relief to know starfishmummy, we havent given up hope on a bit of commando crawling in the future. The tube sounds fairly robust!

Thanks everyone, I tink a lot of it will be 'learn on the job' and I don't think he will want to do too much after he has had it done (any excuse!)

sneezecake - you are right, there was no mumsnet when DS had his (and he wasn't at school) so I only had the nurses to ask; who always gave the "official lline".
I have to say that over the ten years we have been dealing with DS's tube DH and I have developed a healthy disregard for most of the "rules"!!!!
Hope it all goes well, and you know where we all are if you need us!

DS 13 has pej and DD 6 has a peg. I do not use any special clothes for DS as he is virtually immobile,DD however is very mobile by bum shuffling so we make sure her tube is tucked in trousers etc and has to sit in chair for day feed but is mainly fed overnight we thread tube down all in one suit You can get these and large popper vests from Rackety's and cut a hole for her peg, found tummy tunnels did not stand frequent washing.
Like you I did not want to go down the gastrostomy route but I am really glad we did. No more fighting to get calories in and no more stress so good luck.

Forgot to say can't help re surgery as both mine had laparotomies awkward little monkeys!

If bum shuffling and rolling doesnt bother the kids then we feel a lot reassured. thanks x