Gastrostomy support thread no.2! Tubefed children support thread

[Isitme1]

Welcome to thread no.2!!!

Everyone sign in please so we all know who is here

X

official complaint to the surgery then change to a different practice. That's ridiculous.
at dentist on phone so can't type much but thinking of you x

Thanks. .
Ds seems to be over the worst
Hes much happier in himself

How is everyone?

Ds2 isn't getting full at all. Hes drinking 7oz every 2 hours plus bm.

X

I've read some of this thread and am at how much so many of you have to cope with .Honestly . I find it hard enough but can't imagine if I were having to cope on behalf of a LO .

Can I be very selfish and ask for advice about my own feeding tube ?
( I'm 63 and recently had an esophagectomy. Can eat some but need night feeding for various reasons )

My questions are
1 how do you keep the end of the feeding tube ,the bit where the cap screws in ,clean ? Mine looks really yucky with dried feed . Small tooth brush is all I can think of ..

2 should I worry about the constant slow oozing from where the tube goes into my skin ? It's always building up a scab/crust and there was a little pus last time I cleaned it .Not much .

3 should I worry that quite often when I flush the tube an amount squirts back out under pressure ? I've tried explaining this to nurse but I don't think she understands ,says there's always some overspill .But it's the force with which it comes out ( sometimes ,not always ) that alarms me .

Apologies again for intrusion ,I just think you'll be the best people to ask .

TIA

Hello gingeroots
Welcome hope we can help. Sorry about your oesophagectomy what a bummer.
Am sure others will come to help but I will do my best

1. It sounds as if you have a PEG rather than a Mickey. My DD has a PEG and like you I clean it with a toothbrush if it gets really mucky. As stomach contents are very acidic it will kill off normal bugs but the milk can make it a bit smelly.

2)Oozing from site is a common problem due again to the stomach acid
leaking round the stoma and "burning" the skin. If it pus you may need AB's but our GP gives us eye ointment, if just sore I use Vaseline round the site.

3. Re squirting is probably due to wind building up in the stomach do vent regularly. DD is very windy so can appreciate your problem. Also find hold the tube end high above the abdomen helps stop milk flying out.

Hope you understand all that I am sure someone more erudite will bowl along and help

BTW you are not the eldest posting here That's my honour

Take care.
Love to all the rest of you.

Thanks for making me feel welcome 2old2 .

Baby tooth brush it will be .

Any particular kind of eye ointment ,can I get it OTC ?

Aha wind ! I bet that's it ! Tell me about venting ....How is it done ?

PS You're only as old as you feel you know ,though of course that needs to be on a good day !

isitme - second advice about complaint and changing surgery .
I know it's draining and must come when you have least energy ,but .Not on .At all .

A newbie yay
Welcome to the thread!

I squeeze a baby wipe into the screwy bit.
2- sounds like you may need it swabbing by community nurse.

3 yep sounds like wind.
Admittedly I don't vent a lot should do it more

How are you in yourself?
Granny?
Everyone else?
Ds seems to be a lil better
Ds2 is on a lil baby rice as he wasn't getting full. He
Was taking 8oz every 2hours!
X

Thank you isitme.

Glad your DS1 seems a bit better .Baby rice ,feeding every two hours ,that takes me back . >>>faints in memory of exhaustion

gingeroots I am isitme's Granny cheeky little monkey BTW I was not a Granny until I was 64

Re ointment I buy Chloramphenicol from the pharmacy SHHHH.

Glad DGGS is a bit better long may it last. Little DGGS seems a little piggy.

XX

Welcome gingeroots! I think 2Old has covered everything really well. Agree with the chloremphenicol eye oitment. Jess puts a small dressing round if the wound looks a bit gummy, but it only does that when he is poorly with a cold. Otherwise we use buddy buttons, which I make as its miles cheaper that buying them and very easy. Not sure why they work but they are brilliant for keeping the area next to the skin clean.

We put real food down the tube, not this vile muck called formula. Just blended and plunged with a syringe. My little DGS now looks the picture of health instead of a pale, thin, sickly, constipated child. Takes courage but once you are tube savvy it may be worth looking into. People also put alcholol down their tubes, but we wont talk about that!

Just go with the feeding isitme. All this bf till theyre 6 months blah blah.... I'm just go with the flow and what makes you and DS2 happy

Ds2 is on that eye stuff you mentioned granny.

Ginger 2old and i have a granny amd granddaughter relationship. Sorry if you thought I was calling you granny due to age

Oh and like sneeze said regarding dressing cut the non woven swabs that you use to clean it with around half way down the middle and fit it just where the peg sits with a lil mepore tape.

Yep granny he is! Hes 3months and weighs 20lb!
He does good during night. He had his last feed at 6.30 and has just woke up
Normally his last feed is an hour later and he wakes at 5.30-6.30.

Question
Why is ds1 poo like pure acid? The smallest amount really burns him.

How's jess and the boys? X

You're all so kind to make me so welcome .
isitme - golly ,would take more than that to offend me .
"Granny" not an offensive term ,at any age ,anyway .I'be been called worse .

Sorry about DS 1's bottom , mine used to be like that but I'm on lots of omeprazole now . I found metatinum or bepathan helped . I used to add a layer of vaseline on top to help with staining and keep it in place .

I love the fact that people are doing real food rather than the toxic stuff provided . Well done - I can imagine the intakes of breath and disaproval from medical stuff ,so double well done .

I have more or less started doing that with gauze around where the tube goes in because ...well the scab catches on everything and the oozing stains my clothes . The hospital told me to leave it uncovered ...but what do they know !

Now I just need someone to talk me through "venting " and my poor distended abdomen might deflate .

Get a 60ml syringe.

Take the plunger bit out then attach to screwy bit of peg.
Undo clamp and voila there should be a good amount of gas plus gastric contents that come up. If you laugh while doing it more comes out lol.

Hes on 30mg a day. My dad is on20!
Ds2 up for a feed
He had cauliflowe broccoli and cheese baby rice and loved it. Once hes a lil bigger will blend for him.
Think ds1 is having a flare up as hes more irritable, sleepy and keeps rubbing his gastrostomy site.

X

Ds goes for scope tomorrow! !
Yay
They had a cancellation so I jumped at the chance!

X

Thanks isitme ,I'll try that .
My tube goes into the top bit of my intestines so might be different ,but I get lots of wind there as well .

What's DS's scope for ? Good to get it done tomorrow ,hope it goes well .How old is he ?

gingeroots have you got a jejunal tube if so you will have difficulty in venting large amounts I am afraid you will just have to belch (how lady like) DS is jej fed but is fed very slowly 53mls/hr over 22hrs/day.

Grandaughter so pleased about scope, hope you have some answers tomorrow. Send DGGS my love and to Little Piggy. Behave yourself

Sleep well all you Scallywags and you gingeroots

Hes 3.
Dh can't get tomorrow off on such short notice.
Im going to put cows milk down tube in the morning and have done now too so its in his system so it should help with diagnosis if he is cmpi
If he's not there shouldn't be much difference
X

Yes ,have jej tube . I dont really belch ,would help if I could . Yes I run my feed at 50ml ,how pathetic is that ?

My stomach has been reduced and moved to make a dual purpose oesphageous /stomach . But it's a slow learner and I don't think it's fully realised yet .

Moaned at delivery man for giving me nil seconds to get down 3 flights of stairs and pressing downstairs bell after 1 second and setting their dog off .Bells clearly marked with names .

Feel mean and ashamed now

Good luck to isitme and DS . 3 is a nice age ....

He should have waited! Hate it when they are impatient.

Ds is recovering well. They did half colonoscopy too couldn't do full as he didn't have bowl prep. They have taaken biopsies from up and below so waiting game. Everything looked normal when they did it though.
Which leaves it at ok thats good its normal but whats wrong with him then?x

Sorry to hear news about DGGS. I personally found this is quite the norm. DD has had every gastro "look and samples" done. All normal so why oh why does poo squirt out through out of colostomy like a fountain?
Apart from this hope you are OK

Love to all

Big hugs to little DS1 isitme. At least something has been done and i hope they get to the bottom of it (no pun intended re colonoscopy )

DGS had his peg to button cancelled this monday for another 10 day His peg site gets a bit mucky now and again. Could be when buddy buttons are forgotten, but for the first year or so it never had a thing wrong with it. think its leaving them in so long, hence we really want this button done.

I saw the diagram of where they took biopsies from

He cant really say colonscopy os fine as he didn't get a good look due to no bowel prep so stool was there blocking view.

We are home and bless ds2 he's been such a good lad.
He stayef asleep most of the day.

Ds1 was very upset aftwr waking from the anesthetic. They gased him rather than canulating then putting the meds through the canula as he was very upset. He kept crying no dr please. They were in such a rush that they did it while je was wearing his own clothes rather than a gown!
X
I agree they. Shouldn't be om that long
X

Wow so much has happened!
Welcome gingeroots, hope this thread is useful for you.
Isitme yay for looking normal, but not yay for the confusion it causes.
2old lovely to hear from you. Hope all your scallywags are ok
And sneezes.... yeah x
Ds1 OP cancelled until the end of the month, which is just as well actually as hes poorly, some kind of bug keeps puking snotting and coughing. Been laid on sofa all day watching wallE over and over. At least he went to bed tonight, he point blank refused last night ended up downstairs.
He's loving school, even enjoying going in his hoist now which he didn't to begin with.
He's very popular and has a few special friends, one is a Russian boy who has little English, but says E is my best friend, I love E!

Al has just started weening and enjoying most of his food, he has broken my nipple, it won't heal keeps opening up and bleeding
He's sitting now can't believe how fast he is developing!
Typical everyone is asleep but me x

Ouch that sounds painful!
Aww its amazing how much they love the food..
Need to go and change ds1 nappy
X

Thought I had better write something else this thread will disappear down a big black hole.

How are you all?
oldsneeze and Giddy sorry about Elibean's op being postponed do not know what else to say Sorry about chewed nipple brings tears to my eyes!!

Grandaughter hope all is well with my DGGS's

Gingeroots hope you are OK

Life hectic at present Ben had his VNS today he was a star nursing staff were all over him like a rash All the others are keeping us on our arthritic toes

Sleep well all you scallywags that includes you gingeroots