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SN children

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Original poster

gastrostomies -talk to me - were you worried when it was discussed

12 replies

twlight · 26/08/2011 18:44

We are heading down this road soon and its not one i thought we would ever have to go down - so how did you feel when you headed down this road - am i normal to be scared

OP posts:

feelingbetter · 26/08/2011 19:33

Yes, I can confirm you are completely normal.
Nobody wants to put their child through any surgery, especially when you didn't think you would need it.
Is it the right thing to do? is it the right time?

Fact is, if they are discussing it then the answers are yes, but it doesn't make it any easier.

If it is any help at all, it is THE BEST thing we have ever done. DS has now been over a year without an unscheduled hospital admission, his general health is much better and life is so much easier for all of us. He still eats 3 meals a day orally, but has ALL his fluids, meds and breakfast through the tube. All the stress has been taken out of feeding and drinking and we have a back up if he is unwell.

I have never known anyone regret doing it.

It is scary, but the reality of it as far less scary than waiting for it.

Good Luck

growlybear · 26/08/2011 20:01

I would second what feelingbetter has said my dd had a peg fitted 11 years ago.It really does take all the stress out of feeding.My dd can still have some very small amounts of pureed tasters although it could be that that has to stop which would be a shame as she loves her couple of teaspoonfuls of chocolate mousse.lol.

starfishmummy · 26/08/2011 21:47

It took us a long time to come round to the idea for Ds but he was becoming increasingly distressed with his ng so the time was right to go for the gastrostomy. And yes, with hindsight we should have done it sooner.
I would also suggest that you get trained to do all of the tube care -including changing the tube- yourself. I find that being able to do button changes (routine ones and emergency ones) really means that we don't have to worry about finding a nurse or trekking to the hospital.

tooloudhere · 27/08/2011 09:20

We are tentatively thinking about allowing this. Can I ask anyone who has already been there did you prefer them to the ng tubes in terms of comfort to your dc? I know it must be good for them to have the face/throat free but I can't help worrying that the site in the tummy will cause pain.

How old were your dc when you changed from ng tubes to gastrostomy? Did you have the fundo done aswell.

We are finding the ng a nightmare to manage at the moment for a number of reasons and it seems as though we are repassing at least once a day.

Twlight sorry to hijack, we are also very scared of doing the procedure but hope it will improve quality of life for ds and the rest of us. It just seems such a statement too that we will be feeding like this for the forseable.

starfishmummy · 27/08/2011 09:52

Ds was three. Much better for him than the ng from almost the start. Almost because he had it done as an open procedure which is a "bigger deal" for recovery than the endoscopic procedure. (didn't have fundo)

Ds has had very few problems - some infections and over granulations but nothing else. Several years in he became very agitated whenever we had to change the button but worked with a play specialist and we discovered that he didn't like the instillagel because it was cold! We now warm it in a mug of hot water first and he is fine! (his nurse checked with the manufacturer that warming it is ok).

Tooloud we were also reluctant because of the long term aspect - felt that the community nurses were pushing us towards this when what we wanted was support for Ds to be tube free. When it was first suggested we said no but after a further year of Ds becoming increasingly distressed with the ng we made the decision to go ahead which was right for ds. We just instinctively knew the time was right.

bigbluebus · 27/08/2011 11:20

DD had an ng tube age 12 and this was a nightmare to manage as it came out on a regukar basis. Was given a gastrostomy tube after 5 mths of struggling with ng. Went to hospital with weekend bag but in spite of her complex health needs she had op and came home same day! (Didn't have fundoplication).
Can honestly say it's been the best thing we have ever done. We went through all the soul searching about depriving DD of the food she enjoyed, putting her through surgery etc, but since the op we wonder how we ever managed before.
She has gained weight, been generally much healthier, much easier to manage even when she is ill, as it is easy to still get meds and fluids down her. Family days out are spent enjoying the attractions rather than worrying about how and where we can feed DD (who was an incredibly slow eater and drinker). DD is fed during the day by portable pump as we didn't get on with overnight feeding. She is still able to have little tastes of food but no longer has to suffer the stress of eating to survive.
Good luck twilight with your decision, but like feelingbetter I have never found anyone who has regretted going down this route.

Original poster

twlight · 27/08/2011 13:17

hi, thanks all for your replies and Tooloud - no worries re the hijack we wont do an ng tube as it will never stay in long enough - the gastrostomy is a worry for staying in !! has anyone gone straight to a button rather than a peg first ?

OP posts:

bigbluebus · 27/08/2011 13:35

Hi twilight - I'm not sure if you can have a button fitted straight away - but no doubt someone will come along and correct me!!
DD had one with a bar across the inside which stayed in for 2 years and didn't need changing - neither did it come out - in fact it was very low maintenance. The only downside was that when it needed replacing after 2 years, it meant another general anaesthetic. She had it changed for a mic-key button which needs water changing in the balloon every week and the button itself changing every 4 months. Within 1st 2 months of button being fitted it had been pulled out once (not by DD incidentally)!!! Fortunately hasn't happened again since although DD does not pull it - might be an issue for a more inquisitive child though so would definately recommend you get trained up on replacing button in an emergency - as there is a very short time slot in which to get it back in before the stoma starts to close up.

growlybear · 27/08/2011 16:15

My dd had the fundo done as well.You do have to have the peg tube fitted first unfortuntely.I would definately definately agree that you need to learn how to change them yourself as soon as possible.I know it sounds scary but it makes life easier for you in the long road.ie if a tube goes in the middle of the night.DD now has a mickey button we find these easier-her tube is changed about once a month as they usually pop.The trouble with the peg is that for some children it is all too easy for them to pull on having said that my dd has pulled micky's out in the middle of the night.

shaz298 · 27/08/2011 16:51

Hi, Sorry Growly not all surgeons put a PEG in first. My friend's DD had a button right from the start.

My DS had an NG from birth to age 5 ( his anatomy wouldn't allow a PEG by the usual route, he had open procedure)and then had a PEG, converted to a button after about 3months. Button is way better. DS needed to be sedated for NG changes. We were very lucky that he only puled his tube out twice in 5 years!! He does still have huge oral aversions and oral hypersensitivity though and I'm sure the NG contributed to this.

growlybear · 27/08/2011 20:28

Hi shaz down here they only do peg first so I guess like everything it depends where u are in the country

Herecomestheninkynonk · 30/08/2011 17:28

Know it's a bit late but just had a couple of points to add.

I totally understand why you are anxious, it seems so unnatural, yet when you get used to it, there are lots of benefits. DS has an uncordinated swallow and he had the peg very early, at about 8weeks, and then a mini button about a month later.

Although like many children he got a raging temperature after the op, he recovered quickly and it was the best thing ever.

We have (mostly) avoided a food aversion. Children with a tube through their nose or throat can find it more difficult to adapt to feeding later as it has bad memories. If the food goes straight into the stomach there is nothing negative for the mouth if that makes sense. It's also more discreet when out and about and when you can change the button yourself, hospital visits decrease.

We have a feeding pump which was a god send, all those hours holding a syringe in the air... I've been amazed at how many people know someone with a button too, "oh yes my friends daughter, god daughter, cousin etc. Had one of them" somehow that's reassuring too. Good luck :)

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