Gastrostomy :(

[Penguina]

I think my dd may have to have one next year. I'm so upset about it.

Does anyone have any positive and reassuring stories?

I'm so worried about her. She used to be a reasonably good eater (of purees) but of late she is just gagging and vomiting A LOT.

For info she has an undiagnosed neuro condition/epilepsy and all sorts of fucking horrible stuff.

Am feeling very down about her at the moment. It's just not fair.

[FabulouslyGlamourousFerret]

I'm sorry you're going through this. I worked many moons ago with children who had a gastrostomy and children who really could have done with one but parents were reluctant. It certainly takes some getting used to but it's quite simple once you get a hang of it all - good luck

[RemoveAllPicturesOfRon]

My dd had one for about a year - now removed - and it was probably the best decision we could have made for her. How old is your little one? Is she currently NG fed?

[Penguina]

She's 17 months. She had an ng tube for her first 6 weeks of life but I'm stubborn so we took it out and have bottle fed her and subsequently spoon fed her since.

She can't eat like a normal child at all. Can't chew etc but she was dealing with it quite well. Every now and then she has a terrible vomiting stage where she just gags on things because she's screaming and not necessarily because she's gagging on it. Right now she appears to have a cold which in turn is making her cough and vomit. I'm scared to get her weighed but I know in my heart she's lost a lot of weight 🙁

I dread leaving the house at the moment because I know she's throw up. My house just stinks of puke. But I really don't want her to have a tube as when she goes to nursery she'll just be plonked in the corner on her pump and not included in activities. Not that she'd realise...

[Andromache77]

I have zero experience about gastrostomy but I know what it is and you have my solidarity, for what it's worth. Children should be healthy and free to grow, run, jump and get on their parent's nerves, it's just so unfair when they are poorly. I hope that your daughter gets better, as far as possible, and it doesn't come to that, I truly do.

[Penguina]

Thanks andro but sadly she will never get better. She is what she is and I'm still not 100% accepting of that as much as I say out loud that I wouldn't change her for the world.

[youarenotkiddingme]

I have professional experience of Gasostromy.

I've talked through with many parents who aren't keen. I'm not medical trained but in education.

I've seen such positive effects of children who have had one. They are able to maintain good nutrietion which can stabilise their health, medication can be given through it so for 'dribbly' children they get better medicated and therefore are healthier.
You can give milk and fluid through it but it doesn't have any affect on appetite or ability to eat.

If your LO is gagging have you had a salt look at her and do a video fluoroscopy to check her swallow? You can thicken fluids and purses if needs be (get thickener on prescription) if it's the consistency she's struggling with.

It's such a big thing though for parents to make the decision. have you a local SN group you could join and speak to parents who have been through it? Or perhaps contact local special school who may have pupils with a gastronomy who's parents will be happy to discuss it with you?

[PurpleBoot]

My dd has a gastrostomy - she's 15 and has had one since age 9. Like you I was very reluctant as I felt it was a backward step and I somehow felt I'd failed. She has severe learning disabilities with no diagnosis, something seems to affect her appetite and general chewing, meaning she never got enough food orally.

It's been the best thing we could have done for her. Her growth has caught up almost to be age appropriate, she has so much more energy and her mental development has been so much more since she has had optimum nutrition. I understand though completely how you feel and it must be really difficult if your dd is being sick a lot.

On the pump - we have never pumped, we've always done bolus feeds (gravity), but I appreciate this is not appropriate for everyone. I've never seen anyone receiving a pumped feed at a nursery though - do you know how many feeds she would have and how long they might take ?

[youarenotkiddingme]

Amd no good nursery will plonk her in the corner with a pump. They are very portable - ambient children can wear it in the back pack on their back. But paediatricians are very good at working out how much nutrition they need and setting pump times around their daily routine at a pump speed they can manage and to allow them to play etc.

[RemoveAllPicturesOfRon]

Dd are / drank pretty much nothing whatsoever until she was about 14 months old. She was born with a cleft palate and some other issues, and once the palate was fixed she started to eat and drink. The gastrostomy was great because it removed the need to go to hospital every day to get the NG repassed (it came out pretty much daily, sometimes more) and also meant we knew she was getting nutrition and hydration. It also got rid of the NG tube tickling the back of her throat, and removed pressure as well in a funny kind of way. She decided to eat and drink when she was ready.
Dd went to nursery with her gastrostomy and certainly wasn't plonked in a corner. The nursery were great - several of the staff volunteered to be trained in using the tube and the pump, and DD was treated exactly the same as other children. She had a special care plan because of the tube, but only we knew about it.
I remember the general fear with everything so well (still have it quite a bit) as well as the anxiety around weighing, growth charts, centipede etc. It also put quite a strain on my relationship with DH, which we are starting to get over now (and which I didn't really realise at the time). Huge sympathy to you - it sucks. But the gastrostomy might actually make some things a bit better?

[RemoveAllPicturesOfRon]

Huge post, sorry for the essay!

[PurpleBoot]

I meant I've always seen people having a gravity feed when at school/nursery - the nursery needs to ensure your DD's feeding method doesn't exclude her from activities. It can be time-consuming though - school have been mentioning the slowness of one of dd's new feeds.

[RemoveAllPicturesOfRon]

Also, centiles, not centipede! I was never worried about centipedes!

[Penguina]

I'm go8ng to weigh her tomorrow morning and see how much weight ahes lost.

The reason I said that about the nursery was that our Lady from portage said that those with tubes and pumps can take a long long time compared with those whom are spoon fed and therefore miss out on more. She would be at a special needs nursery so they would all be trained etc.

I think I just dread another hospital admission. I feel like our local hospital have no idea about her. She's seen by a neurologist in Oxford and I think he's the only one who semi understands her. I keep putting off speaking to anyone about this current stage of vomiting which has been going on since last Wednesday when she was sick from a bug, in her bed and now it's a cold. Or is it? She's such a head fuck. No one should have to go through these things.

[JinkxMonsoon]

I feel that the lady was perhaps a bit out of line by painting such a bleak picture of children with gastronomies. Clearly, as previous posters have said, there are lots of positives.

And I'm sorry to go all amateur psychologist on you, but I think you're resisting the gastronomy because you feel so bloody sad about your DD. And that is so understandable. You said you've been stubborn and stopped the NG tube and have been spoon feeding - to maintain a sense of normality? But it's not working is it? As much as it must be difficult to accept that oral feeds just aren't working, it'll be lovely to not have to worry about a house smelling of vomit and vomiting when out and about?

I just want to give you a hug, but will have to do. Do you have any support? Someone you can speak to who understands how bloody hard it is?

[Penguina]

She really didn't say it in a negative way. It was in a conversation we had re me worrying about them spoon feeding her when she's not v good at it.

You are right thiugh about why I'm resisting it. I still haven't come to terms with it all. I'm protecting myself because if I think about it too much and what the future holds, I could get very depressed!

I do have support i suppose, from family. But I don't want it. I hate pity and i hate people worrying about me and feeling sad for me.

God. I sound horrendous. I have had a shit, vomit filled day.

[RemoveAllPicturesOfRon]

Sending support - I remember days of vomit and unhappiness. Our sofa was soaked with it. I didn't want to leave the house because DD was "different" and I felt that I had to explain it to people and then remain cheerily upbeat about it. The voice in my head would be saying "it's not FAIR" over and over again, but I felt I couldn't tell anyone in case I lost the ability to cope.

[youarenotkiddingme]

Your feelings are perfectly valid. Don't apologise for them. But please do get some support for yourself.

Have you heard abiut the grieving process that patents of children with DN go through?
They say it's a perfectly normal reaction to a parent wanting to protect their child. That you have all these dreams and plans about what your life with your child will be like. When you realise those dreams and plans are different yiu have to grieve for that life you imagined and come to terms with the one you have. This can be repeated everytime something comes up - eg lack of oral feeding. It's biological for a mother to want to feed their young. Accepting it'll be a different way isn't easy. And it's unbiological not to oral feed - but that doesn't always mean it's best to oral feed.

The children I work with who are pump fed are in wheelchairs. We set up the pumps in the morning and it takes 15 seconds to plug them onto it whe it's their time for feed. They join in all activities with the other children and this morning I'm taking a young lad who will be on his pump out on the minibus to archery at a sports centre along with 5 children who are all ambulent and oral feed. There is certainly NO missing out - a good setting will be fully inclusive.



Have you popped over to the SN boards? They are a a very cup porridge bunch and I believe in sn children there is a long standing support thread for parents of children who have gasostromies.

[Andromache77]

OP, I realise how ignorant my post above sounded and I do apologise. As I said, I have no experience of gastrostomy in small children but from what you say your daughter must be a little older than mine so I can imagine the sense of lost opportunity for her, the sheer bloody unfairness of it all (and yes, I fully understand how lucky I am to only imagine it).

My father underwent dialysis. First he tried peritoneal dialysis, which entailed having a catheter placed in his abdomen which he would then hook into a pump for the dialysis fluids to be pumped into his peritoneal cavity and then taken out. Even with him being a fully functioning adult who could take care of himself, be mindful of his hand hygiene and who took very good care of his catheter and the surrounding area, as this is so prone to infections, it was extremely worrying and time-consuming. My imagination fails when I try to picture a small child undergoing something even remotely similar, even though that will probably be for the best, just at it was for my father. You cannot let your daughter slowly starve or constantly gag and vomit and lose weight as a result, just as my father could not slowly poison himself with the toxins that his kidneys could no longer clear from his blood, but that doesn't mean that it is easy to accept.

I hope that you find a way to come to terms with it all. I remember my father resisting the procedure and trying to put it off, even when feeling like shit from the toxins and the excess water that he couldn't get out of his system anymore. Our desire, our need to protect our children is so strong that this must hurt a hundred times worse than anything that could happen to you (and you must wish that you could take it onto yourself, to at least share the burden so she could be better, but you can't).

I have no practical help to offer, but just remember that your feelings are valid and understandable and that this is so hard that you shouldn't have to do it alone. If you have support, take it. If you need help, ask for it. It's not just for you, you need to stay strong and sane for your girl, so if you won't do it for yourself, then do it for her.

[DollopofTrollop]

My DS's gastrostomy has saved his life a couple of times over the 3 years he's had it!
He has a rare gene mutation and all the kids with this mutation have problems eating.
Like you guys, tube fed until 7 mths then finally got him onto a bottle but struggled with solids ....

We waited a year from recommendation as we couldn't face it .... It's one of the vest decisions we've made ... PM for more info !!!
Good luck !

[sallysparrow157]

There's no reason why your child could spoon feed and have a gastrosomy as well - oral feeding during the day and a pump feed overnight to top up calorie requirements for example. I've looked after kids with gastrostomies for all sorts of reasons - from kiddies with a completely unsafe swallow who can have nothing by mouth to those who have a gastrostomy purely for medication and eat and drink completely normally. It's a scary step when you think about it but I don't think I've met anyone who's gone on to regret the decision and I certainly don't know of any kids who have been severely limited in their day to day activities because they're tied up to a pump feed and forgotten about in s corner. I think for you this is the worry of what a gastrostomy represents rather than the thing itself, which is completely understandable xx

[Penguina]

Thought I'd update you. SALT came today to watch her eat. They have said she probably should have a tube as she's not really gaining much weight but she's doing ok and luckily has a very strong cough. I think once we have got over the operation side of it we will accept it.

[putputput]

In my professional experience gastrostomies can be an absolute god send.
I've worked with so many families who have spent hours on each meal time, exhausted and tired and not seeing any results. It can have a huge effect of their relationships with their child as meal times become tense and anxious and parents feel like they are failing their child.
It sounds as though there is no reason your little one can't have oral feeds and use the gastrostomy for top ups. You can meet her nutrition and fluid needs and if you have to get medications in to her it's a lot easier.
Post op recovery is usually very quick and then continuing care revolves mainly around good hygiene.

Having said this has the reason for her vomiting been investigated? A gastrostomy won't necessarily fix this unless it's the oral feeding making her gag.

[Penguina]

The vomiting is usually through gagging yes. As she can't hold her head up it often goes backwards , opening her airway.

I think we will feel relief when she has one now. We have accepted she needs one which is a big step.

It's often very stressful feeding her when I'm out. Its not a fun experience!

We will use it to top up. She doesn't have anywhere near enough water in day!