Gastrostomy/ tube feeding support group...

[Isitme1]

Hi.
I was looking for a support group for tube fed babies/ children but couldn't find anything.
Come and share you experiences and tell us how you are coping and how you felt when you first started with tube feeds.
I will introduce myself:
I have 1 ds- 21 months old.
Poor eater due to severe reflux and severe food aversion.
At his worst he was fed Baby food via syringe into his mouth like meds. He would take 60 mls a day in high calorie milk and a sip of water or juice in the day with no food in between.
He would scream at the sight of his high chair.

Fast forward a few months and he has a peg feeding tube. Hes on neocate advance ( suspected milk allergy) but have kept him on normal food to encourage oral intake. He still has very little by mouth but thankfully he's getting all his nutrients.
The gp put me down as a neurotic mother.
Ds is being seen by top gastric paediatrician.
He's having gut motility checked as his food is still
In his tummy 10-12 hours later and comes our undigested.

Hes had meningitis and septecmia at a young age too.

Come and introduce yourself!
X

How is everyone here?

Well, dh has a so we are all miserable Ds just got home from being a week away (with his grandparents) and dd is doing quite well (aside from more weight loss - she had bloods drawn yesterday and I haven't heard how they looked, but she is happy and seems well).

My foot is still giving me the gears (as I suspect it will for some time). The bruising is easing up, but I have developed a pressure sore at the exact spot the tree landed. That has been irksome, to say the least, and hurts like mad. Aside from that, though, I am great.

How are things in your castle?

Lmao
I did like that!!
I'm in not my own castle yet! Me and ds are lodgers lol at my parents' home as our house isn't ready ( waiting for dh to come along so we can move)
Ds is currently on pump. He's had more broccoli for tea as he refused to have what we were having. It's defo better than nothing. I think he needs to be seen by his gastric team quicker rather than middle of sept. I'm sure he needs his peg changing it's building sediment inside the tube and I can't do nothing about it. Warn water doesn't even work!

X

Have you tried any sort of cola? If you fill the tube itself with cola and leave it to sit for as long as you can, the acid in it will help to break up organic deposits. We used a combination of pancreatic enzymes and sodium bicarb, the the enzymes are prescription, I think.

I know there are "clog zapper" type products, but I have not used them, so I can't speak to how well they work.

Beemom has reminded me that ds's nurse gave us half a tub of test strips -.the sort they use for testing urine - they detect blood so if anything dodgy came back from ds's button (or his poo looked odd) we could test it.

Never got to the root of Ds's malabsorbtion nut he was.put on peptamen by the Dietitian at Birmingham childrens hospital and he improved almost immediately

Ds was worse off on the fortini his tummy ballooned so much even if he just had a few sips!
I took pics to show as evidence and his drs said it was malnutrition like the kids in 3rd world countries. I was so upset by that comment! Every penny I had went onto trying to feed him!
I will try the cola thing tonight.
He does seem be kicking up a fuss when cleaning peg site or flushing (not as much as cleaning though)
We would be very lost without sky+ here as it keeps him distracted of his programmed could come on when ever we needed them to!

X

2old. DGS vacant episodes - literally 1-2 heart stopping seconds, so I couldnt bear half a minute and going a bit cyanosed

Bee. What can I say about your little girl? I would have lost my mind by now I am such a worrier. simply couldnt cope. DGSs EEG came back normal so I hope the episodes were a one off (hundreds actually) but you know what I mean. I think the heart stopping was waiting for them to become full on TC fits tbh.

Think DD did the cola and it works! We feel a bit of a fraud on this thread as it was just: tube in, increasing amounts and calories = podgy (well podgy to us!) child who is still eating! So far no problems x!

Isitme. We have sky+ and ipad2 brilliant for keeping them occupied when feeding!

PS Sunny all day and painting garden furniture crazy colours. I have such an exciting life

Sorry for selfindulgent post DS5 not capable of anything but few on body sign language, DD4 only communicates by eye contact and body language. DS fed 23+ hrs/day and DD prefers News to CBBC's cannot connect cartoons to life.
This holiday will be spent taking photographs of familiar objects to compile her a book that she might understand I am so ?envious of you No not really just I have to have different expections.
Sleep well my friends----hopefully xx

hugs 2old
I do admire you shhh no one else knows :)

How are you?
X

Isitme thanks my friend.
I am fine overworked but arn't we all so 2old stop moaning
Hope your DS and you are ok. How is your DM how many weeks is she? Not being nosey just concerned.
Been half watching the Olympics seen Usain Bolt so I am happy
Hope you get a good night's sleep
x

2old. I too am full of admiration for you and seriously don't know how you do it. Hope someone has nominated you mum of the year! Still admiration doesn't get up in the middle of the night to sort out sick kids .

We are also going to do a photo thing as DGS has an aid from SALT to get him started communicating more. Even though he is moderately affected by his CP and can't sit unaided or use his arms and hands well, we are still grateful he was not more severely affected as it was a few minutes in it. It's depressing sometimes when you have to keep moving your goals backwards and accept the inevitable wheelchair but even parents with mildly affected children find it just as difficult when theit child can sit and is wobbly walking when we are thinking if only DGS could do that we would be jumping for joy.

Still you keep on and DD has me to keep nagging supporting her

Sunny here again. Olympic opening ceremony was brilliant and quirky!

Do you have help in the school holidays 2old ? Must be so hard, DGS is so much heavier now but can't imagine hoisting! Awful.

Hi isitme x

Dm is 13weeks. She Had a massive bleed at 8 weeks (had to call ambulance)
But baby is fine thankfully.
Had a decent night sleep sil has got ds ( she lives next door and ds saw her and went to her) so I have a little break.

Hiii sneezecakesmum
How are you? What colour is your new furniture

I have to say without the support of DM emotional support I would really be struggling without her.
So sneezecakesmum sneezecakes is very lucky to have a supportive mum like you!

didn't watch Olympics cbeebies and Disney junior own our tv
for everyone
X

Update
CN said it seems like he might of had some trauma to his gastrostomy site and that will of caused some bleeding he's always falling over and running into the sofa so the impact will be on g-site
Ds is very uncomfortable with his feeds in the evening and at night so she is going to speak to the dietician. They recommended I got ds weighed on Tuesday and that I rang through to gastric team to tell them the bleed problem and to ask if ds needed his meds increased as that may help with the pain.
But even if ds meds are increased his reflux will not stop it will just stop it from burning the actual sick coming up into his mouth will not stop.

How's everyone's day going
X

Quick question
Why is there thick bubbly liquid coming out of tube?
Its as thick as phlegm

X
Ps hope everyone has had a good day
Looking forward to your replies
X

Isitme thanks for telling me about your DM do hope every thing goes OK for her and baby. I expect you are wonderful support to her as well. I would have loved a mum like yours
I suspect your CN could be right, I do remember when pushing DS's trans-jej in he bled. BTW pineapple juice is good for blocked tubes
re phlegm has DS got a cough because if he coughs and swallows you will get the gunk when you aspirate just a thought. DS,s aspirate is thick and very smelly but is not fed into stomach,
Oldsneezecake thanks for mentioning seizures DS is seeing a good paediactric neurologist on Weds I will see what I can find out about vacant episodes.
Don't know how to put this we asked for our children (except last she just arrived) Couldn't do it without the old fart. I have great admiration for you mums who asked you if you wanted a DS with SN's so to you for being brilliant mums etc
Sleep well you scallywags XX

Nope he's got no cough atm.
He really banged his tummy on the edge of a glass table today.
Im a nosey bugger so don't worry about it. It's not top secret she can't hide her growing bump!

Hope everyone gets some sleep. Ds has had some nurofen x(cn said it may help with any pain help me sleep too)
Night night everyone

2old. No need to look up vacant episodes. They stopped 3 years ago thank god and if you tell me they often return, I will shoot myself! Did look into them at the time and they weren't medicated, just stopped on their own after the anaemia righted. So fingers x. Where his brain damage is not associated with having seizures so hope they stay away!

Before SN hits a family you look at parents with SN children and think they are from another planet, very strange perceptions really. Then you get in that position and people stare at your LO as though he's from another planet. It's the staring I hate. Will lose it one day! .

Isitme. Is teething making him swallow lots of mucus? Sounds like it was injury that caused the black liquid, sounds horrifying tbh.

Garden in painted in dark green, light green, bright blue and (shock horror) have painted the decking cream! O huge shiny rod for my own back! Makes up for lack of flowers! Old fart and I can never agree on plants!

very big rod

Ds has had more blood come out if tube. It's not as dark as last time but not fresh either.
He won't really let me clean gsite so today I've give him 2 dummies to keep him occupied while I clean him. He was flinching though so I do think it hurts.
I've tried ringing through to cn and no one is picking up (they do work on Sunday until 6/7 I think)
X

Oops forget to say morning
X

Doesn't sound too nice. No experience of this, but it needs testing to see if it's blood as it sure sounds like it. Adults with stomach bleeding and severe irritation can vomit black stuff, the stomach acid turns blood black I think. Would be very worried if this was us.

2old - if you meant your DSs vacant episodes, sorry - misunderstood. Its me age guv!

Yes you silly old fool I did mean DS's funny turns his SATS drop to 58-60% And I thought your DGS was the same but me getting old probably got it wrong.
Please don't shoot yourself who apart from Isitme can I be rude to.

Went along the coast for Sunday lunch with friends, nice restaurent a bit posh go there quite often and they are very accommodating
There were 13 of us, including 3 in wheelchairs and 4 with Downs. People on next table pointedly moved and then let their children run amok.I give up. Am I being anti-anti-disablist

Anti anti disabalist im in thar boat too I'll give you a paddle?

We're all allowed to forget our manners sometimes. I think it's the effect our Dcs have on us.

Have a funny feeling gastros will want to see ds in Sheffield if he's still bleeding on the inside. He's not been sick so I suppose that's good?
Cn said ring through tomorrow and let them know and ring the delivery people nurses who specialise in stuff like this.
She said it's nothing urgent so I can hopefully get a good kip!
before he gets admitted
Dh said I told you that the tube is no good
It's saved ds' life!
How's everyone day been?
.

X

Morning all
Or should I say afternoon??

Gastros rang they want to see ds in urgent clinic on Thursday.
That's fine by me.
I think we will be going via train by the looks of it.
don't like travelling by train
How is everyone??
X