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Gastrostomy/ tube feeding support group...

999 replies

Isitme1 · 03/06/2012 12:01

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

OP posts:
2old2beamum · 10/08/2012 22:54

You 2 are 2 quick 4 me I am slow Smile

2old2beamum · 10/08/2012 22:56

Oh bloody hell X posted again Iam senile 1 so give me a chance

Isitme1 · 11/08/2012 07:50

No problem senile1
:)

Good morning to all.
Seems like its going to be a lovely day here.
Sun is shining bright. It's sods law that I bought ds thicker clothes the other day and now the sun is shining!
Ah well good thingies didn't chuck his shorts!

Hope everyone slept well
With no pump alarms!
X

OP posts:
sneezecakesmum · 11/08/2012 11:41

I once worked in an elderly care home and it was chrismas and the local undertaker brought us some chocs and a card. He pecked me on the cheek and the thought popped into my head "I must be the warmest thing he's touched in a long while"! Grin

sunny here too. bbq this afternoon Smile

Have a lovely day all. x

Isitme1 · 11/08/2012 17:06

Lol.

Lol

Lol

We've been and bought some new shoes for ds
Addidas sneekers and they look lovely :)

Then went to the fair and he was fine. We sat on road train and he was waving bye to everyone :)

On the way home he fell and cut 3 fingers on the side. Pretty deep too so I've been out to tesco for antiseptic wipes.
It's been a long day!

X hope everyone has had an easy day
X

OP posts:
2old2beamum · 11/08/2012 21:29

Good day here visited lovely friends similar set up to us, spent the day playing with their DS with Downs. His mum is a brilliant cook so I ate too much Sad
Hope you all have a good night and no peeping machines. XX

Isitme1 · 11/08/2012 22:11

I do that on a regular basis Blush

OP posts:
Isitme1 · 12/08/2012 20:30

Helloooo all.
Hope your all doing well
We've had an rather eventful day again

2 hours wait at out of hour drs for myself.
I got a phone call while I was say there (after2 hours) saying I wasn't there! I said I've been bloody sat here 2 hours!
I got seen next.
Another uti here for me.

Ds cut his hand falling yesterday and it still looks red and swollenish so I hope it doesn't become infected!

To top it all off my bed has nearly broke!!!!
Need to order new one tomorrow. I co sleep with ds so I can't have him on broken bed or the floor!

How is everyone?????

X
X
X
X
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OP posts:
2old2beamum · 12/08/2012 21:22

Like isitme not a good day.
Isitme UTI's are vile hope you feel better soon, poor ds hope his hand is ok.
DS decided to have a rather long and violent seizure at midnight has been in pain since, I think it could be his neuropathic pain back so have increased his Amitriptyline so that will knock him for 6.Sad
DD has been brilliant today Smile
goodnight all xx

Isitme1 · 12/08/2012 22:11

Good and night don't go in1 sentence here.
Ds nights are getting worse even with no sleep during the day!

Absolutely knackerd
X
Hope ds is better soon and I'm very happy someone has had a good day and even happier it's dd :)
X

OP posts:
gallivantsaregood · 13/08/2012 08:37

Hi Everyone, I'm back and trying to catch up :) . Been to Holland to visit In-laws for 2 weeks . Hope everyone ins well ( will find out in a minute hwen I get up to date)

Sneezecakes: Thanks.Really sorry to read about your DB. Reading back and you saying it's the staring you hate. I have a T-shirt for my Ds ( which is sadly now too small). It says in huge rainbow coloured writing. I know I'm cute, Please don't stare!......I loved it :)

Beemom: Hope your foot is better....ouch!

Isitme : Glad DS got his button and you can get used to how easy it will be for both of you rather than his PEG. Still not up to present day but will say bye for now. Have school shoe sand bag to buy, uniform to wash and Ds off to school tomorrow. I haven't unpacked cases yet from yesterday either. TBH I thought school went back on Wednesday but did a little miscalculation, not leaving myself much time to get organised....ooops!

Nice to be back though :) xx

starfishmummy · 13/08/2012 09:13

Sneezecale Grin at your son going to the wrong funeral!!

I once turned up a week early for a funeral - I thought it was odd that I didn't see anyone I recognised at the Crem! Wasn't sure which chapel it was so checked on the notices outside and the penny dropped!! Luckily I hadn't gone in!

Isitme1 · 13/08/2012 09:42

welcome back galli
Hope you had a good time. It seemed a lot longer than 2 weeks lol

Hope there's not too much for you to do at home

Love the tshirt your talking about!

X

OP posts:
Isitme1 · 13/08/2012 09:43

Hi starfish
How's you and ds?
X

OP posts:
starfishmummy · 13/08/2012 11:16

Hi Isitme, we're fine thanks - although summerclub has now finished so someone is bored!!!
He has hospital today - joint clinic with his spinal and neurosurgeon consultants. Came out of the blue - they are at different hospitals and have spent several years not communicating about possible surgery for scoliosis. We would see one who would send us to the other who wouldn't have got the other ones report....... So it seems they are speaking at last!!

Hows your Ds doing?

Isitme1 · 13/08/2012 13:57

Ds is up and down.
He has been running around the park for the past 2 hours. I did think he would eat when we got back but nope. It Defo was not worth him burning all the, calories if he wasn't going to eat :(

In search of a good cheap metal frame bed.

X

OP posts:
onepampam · 13/08/2012 14:40

hello nice to hear from friends,i feel like i could call you guys friends.i am a mother of a soon to be 4 year old boy.he was born with down,premature and a gang of other issues G-tube being one of them.most recently,since he has been eattin pureed i had to take him in th er.the tube was leakin badly,bleedding and just a mess.i fought hard for them to remove it for good and for once i got my wish and its been a sucess.he is eating 3-4 times a day.and geting continuios NG feds at night.i feel that he will soon be walk since the most painful part of his body is healing....its been a long rode iv traveled and still plenty left but guys keep working with those feds we know our babies best.ill pray for and with you all and im so glad to have found a sight to hopfully call home.it sucks keeping things in.

2old2beamum · 13/08/2012 17:18

Welcome onepampam I hope you are either mad or senile they all are here apart from me. Motherhood can be very heartbreaking and hard. Pleased to hear your little boy is beginning to eat. My 2 scallywags will be tube dependant for life. However I have 3 wth Downs who are now grown up and have been pure joy

Glad you had a good Dutch holiday Galli, bit of a culture shock coming home
Isitme your DS sounds like DD moves like the wind no wonder her weight is static, good job she only "bum shuffles" as I can only just keep up with her poor old bugger. I agree good and night do not go together
Hope everyone has had a trouble free day---ducks below parapet.

Isitme1 · 13/08/2012 19:00

welcome onepampam
Very glad to hear your ds is eating. I bet it's lovely to see him eat.

2old I bet the wind would get tired out chasing them! Ds doesn't walk. He looks like he's boxing lol. You know how they jump-shuffle side to side like that. Like he's on springs lol. He's really fast too!

He had very little dinner and for tea he's had some salmon, sweetcorn and ringo crisps Hmm he bits, chews and spits some food or gets excited at tries to put too much food in his mouth then fails and gets a little bit in and the rest goes on to his lap.

Ds is going to have a bath tonight to try and tempt him to stay asleep lol
X

OP posts:
Isitme1 · 14/08/2012 10:57

Morning all
Hope you've all had an easy night.
sounds impossible to me
Ds has had bleeding from his gastrostomy site. Fresh blood that's crusted. It's not dark brown blood.
Any ideas as CN won't see him until after 4 Hmm
Angry
X
Sorry to put a downer on anyone who is having a good day
X

OP posts:
gallivantsaregood · 14/08/2012 13:48

Hi Isitme.....your poor DS is having a terible time with his tube a the moment. If it has crusted and he is otherwise well, I'm sure it will be fine to see the CN when she comes.

Hi Onepampam and welcome. :)

Ds back to school this morning. So far so good, no phonecalls yet and it's almost home time :)

Hope you are all having a good day. Weather is weird here today. Was lovely and warm so put on some shorts to sit outside and do a bit of reading, then it rains, thunders and now the sun's back out!!

Isitme1 · 14/08/2012 17:04

It has crusted yep but the button looks too loose to me. It almost hangs out when feeding. The last time CN came round to change the water they noticed then too.
His oral diet is going down the drain again.
They said oo it's one of the best gastrostomy sites we've seen. I felt like saying yh I know it's a good site but blood isn't supposed to be normal. He seems very uncomfortable with this silly button.

Gali the weather was really weird here too last week. We managed to get out to the park and by time we got home it was thundering really bad got very scared

Glad ds has had a good day at school so far
X

OP posts:
gallivantsaregood · 14/08/2012 20:35

Isitme: Did the CN come? Can you check yourself how much water is in his balloon? If Luuk's is looking a bit loose I sometimes put a little bit more than the standard 5mls in. Alternatively if DS has lost weight, he maybe needs a shorter button? Ask CN to check depth maybe? Hope all is well xx

gallivantsaregood · 14/08/2012 21:11

Everything crossed here for a quiet night tonight. DS went back to school today and was up at 1am vomiting last night. He isn't good with excitement at all! Guaranteed that Christmas/Birthday/ holidays he will be puking!!

Hope everyone else has a quiet, healthy night. xx

2old2beamum · 14/08/2012 22:22

Isitme hope you managed to sort DS's balloon out I actually prefer PEG's and PEJ's as they "stay put" We have Fuciden H to put on Gastrostomy site which clears mucky sites very quickly.
galli good to have got DS back to school with no 'phone calls. When mine are at school I shudder if the 'phone rings (which is frequent) One advantage of
school holidays!!DD Downs always pukes if excited
Hope all our Scallywags sleep tonight.
XX