taadaa shiny new gastrostomy support thread no.3 tube feeding support

(1000 Posts)
isitme1 Wed 04-Dec-13 08:29:49

Welcome to the new thread! !
New and old are welcome here

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isitme1 Wed 04-Dec-13 08:30:46

Woops should have said
This is the unofficial gastrostomy (tube feeding) support thread

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OpheliasWeepingWillow Wed 04-Dec-13 14:30:29

<tentatively joining in>

My dd has suspected oesinophilic disease and is tube dependent but no other special needs. Is 22 months.

Refluxes constantly. I need to change out the milk x 2 a night (beep! Beep! Beep!) and I always smell of Neocate vomit.

Sad sigh

isitme1 Wed 04-Dec-13 17:04:14

Neocate sick stinks! !

Ds has the neocate too.

Hmmm do you change it because it runs out or to keep ot fresh? ?
If it was for keeping fresh we use little ice pack block thingys in the summer when using his backpack when out to keep it fresh could you use that?
if its because it runs out could you ask for bigger giving bags?

<wonders where everyone else have buggered off to>

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Giddypants Wed 04-Dec-13 19:11:23

Hello, checking in had one mad day. Done lots of baking for Elliot's school, even got the mil involved she is a great baker.
Now just settling off to bed. Going to watch I'm a celeb night all x

sneezecakesmum Wed 04-Dec-13 20:01:49

Just checking in on the shiny new thread fsmile

Ophelia .... Welcome. fsmile. Does your DD eat orally? Is she only tube fed? We had dreadful problems until we started blending food and putting it down the tube. Plenty of mums do this now and I learned about this on this thread!

OpheliasWeepingWillow Thu 05-Dec-13 15:01:22


She won't eat orally - lots of aversions and delayed allergies which include chicken, rice, milk... Lots of 'normal' things make her vomit / come out in hives... Is horrendous. Oats are OK but she won't take porridge any more.

I change the bottle so much as we rely on a 6 hour hang time overnight but right now she has a cold so the rate is super slow... Long story. Hopefully next week we'll be back to one bottle changeover!

isitme1 Thu 05-Dec-13 17:01:19

Sounds really stressful willow.

Sneeze and giddy glad you made it fgrin

Hmmm think everyone else got lost on the way fsmile

Long story short
Went shopping
Mum bought chicken burger sandwich thingys for us to eat on way home.
I started eating mine and guess what
I gave some bun 1st he ate
Then I tried some of the chicken
Then gave a bit of both like chicken sandwich

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2old2beamum Thu 05-Dec-13 21:26:03

Hi all Are you ready for a rant!fangry +++
You would think feed company would deliver Jay and Annabels' food and equipment together------Oh no Annabel's was delivered last week. Numerous 'phone calls have stayed in 4 days for promised feed etc. It finally arrived tonight at 18.00hrs mid colostomy change and a double order delivered 2000 bloody syringes, 120 giving sets 60 water bags the list goes on. Where the bloody hell am I supposed to store this stuff! calm breath deeply fhmm

How is everyone?
Ophelia glad to meet you we are all lovely here except oldsneeze who is bonkers fgrin and I am very old fblush Food aversion is so distressing
Well done DGGS for eating you are a little star

Oldsneeze have thought of blended diet but her diarrhoea started long before tube feeding (reason for tube feeding inhalation poorly repaired palate) Am certain it is not Crohns poos not right IYSWIM

Much love to all.
Sleep you little tinkers ALL NIGHT

isitme1 Fri 06-Dec-13 20:04:29

We are due a delivery in about 10days

On the way to out of hours drs
Ds1 has temp going upto 39.2

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isitme1 Fri 06-Dec-13 20:54:54

Ds was shaking (rigors)
Dr said next time that happens he needs to be seen in a+e asap.
He has tonsillitis
Faking hell.

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OpheliasWeepingWillow Sat 07-Dec-13 05:33:59


Giddypants Sat 07-Dec-13 09:01:32

Oh no, poor ds1 if it's not one thing it's another! At least with they tube you know he is getting the full dose of his medicine!

ophelia food aversion is awful! is there a possiblitity she will eat later? We have found with DS food aversion when given time to explore food at his own pace he is more inclined to eat, he had noodles yesterday, and enjoyed them grin he likes to try things now that his baby bro is weaning, you know the saying monkey see, monkey do!

So tired today, starting to baby proof the house, Alex has decided that after a couple of days crawling it's time ti start standing!!! He opened the shower door with me in there in Thursday I had no clue he was there until it started getting drafty! Looked down and he was there with a big grin on his face, I'll try and post the picture I took.
Love to all sounds like he's waking up. Must dash before he crawls off the bed!

isitme1 Sat 07-Dec-13 17:47:08

Bless him
Well had an eventful day
We've been transferred to a hospital miles away from home
Hes still spiking high temps.
Its defo tonsillitis but they not happy with the shaking
Currently hes knocked out asleep due to high temp
We are going home though as we know what it is thats wrong and hes already on antibiotics x

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sneezecakesmum Sat 07-Dec-13 20:14:14

Oh poor little poppet. sad. I suppose if they are happy for him to go at least that sounds ok and you don't have a big fight getting the meds down! Make sure he has lots of water and calpol etc and just ride it out. It's that time of year when all the bugs are thriving. Tonsillitis can be really nasty.

Baby Al is a little tinker.


2old2beamum Sat 07-Dec-13 21:46:07

So sorry DGD about DGGS so hope he feels better soon. Agree with all what Oldsneeze has said.

Ophelia DS was on Neocate and I used to make up enough for 12 hours to hang over night and yes it stinks!!! grin

oldsneeze I am so glad Ali is a little scallywag grin

Sleep well my little scumbags give your Ma and Pa a break including mine


isitme1 Mon 09-Dec-13 09:38:33

Thankfully hes up and playing now.
Hes still very annoying touchy feely and crying at everything. He reminds me of a girl on a period lol.

How is everyone? ?

Ds also had blood in his urine but they didn't seem to bothered as their focus point was the puss on his tonsils.
I started with kidney problems quite young and I did mention it to them they didn't say anything but I suppose he was there for obs not anything else.
Will get his urine checked when antibiotics finish.
Even though he was on them when it showed blood.

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starofbethlehemfishmummy Mon 09-Dec-13 18:55:38

Hello. I Aam still.around.
Isitme - glad your ds is up and hope he continues to improve.

2old. blooming eck. I moan about the boxes we have but....Although actually things have improved and after years of asking, the dietician agreed to him having litre packs of his feed with a giving set - so lots less equipment. We have also been moved to weekly use syringes. (Like we used 15 years ago but then they decided we needed to have daily ones....)

Ds is doing well frommthe spinal pov after his op in the summer. Unfortunately he is skin and bone so have had to increase his fortisip :-(

sneezecakesmum Mon 09-Dec-13 19:32:11

Starfish sad. Horrible thought to have a child who is skin and bone. Hate the hideous formula but if it's the only thing that works I hope it builds DS up over the winter.

Jess has stopped els overnight feed so we need to find an extra 400 cals from somewhere but at least the thought of him strangling himself overnight has gone and if he wakes up crying he is less likely to puke everywhere. fshock

starofbethlehemfishmummy Mon 09-Dec-13 19:47:28

I think he is destined to be slim - like his dad but some padding would be good. Pity I can't give him some.of mine!!

2old2beamum Mon 09-Dec-13 21:48:51

starfish glad you are still around. Feeding equipment drives me nuts!!
DS is unfortunately is not "allowed" to use syringes twice and "they" think I am a dopey mother feel Annabel should also have single use syringes as I may muddle them up. I know I am old but fhmm Re slim they are much easier to hump about. What back surgery did your DS have?

Oldsneeze hope all goes well with feeds the thought of a machine not beeping must be a plus.

DGD hope you are OK don't let the buggers grind you down! XX

Sleep well you little tinkers XX

isitme1 Tue 10-Dec-13 10:15:03

For feed stuff I have a old bookshelf that its stored on.
Ds has multi use ones. Which means sterilising them (dont mind doing that just stick em in with ds2 bottles)

Started ds2 on second stage food as he has some biscuit with me on a morning and ive seen him chewingit (tthe biscuits is dipped in tea and is a lil lumpy)
Hes doing ok with it too. Rather than him gipping on it later on like ds1 would (I know totally different story)
Hes had strawberry cereal with yoghurt this morning fgrin

How is everyone?
Ahh granny thats what kids do best fhmm

Ooo we are going to buy a car which Im getting insured on for provisional fgrin

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Giddypants Tue 10-Dec-13 10:43:44

Hello everyone, nice to see you again starfish x
Ell is at school, Al just in the process of going to sleep, and the f****g dog is barking gggrrrr! Hopefully no one coming to the door.
Bugger someone did come to the door, by some miracle Al still asleep, but I'm up, so there goes my marooning power nap angry
Will write some Xmas cards instead and try and figure out how to do some Xmas presents.

I'm hating weaning, I just don't know what to give him, everything I make is rejected, he's living on fish fingers and spaghetti, with the occasional orange and chocolate biscuit, which I'm sure he recognises the word!
Oh well will do a bit of cleaning in my zombie like state.
Elliot's nativity play tomorrow, he's a sheep grin

2old2beamum Tue 10-Dec-13 21:06:14

Hi all,
Things here are brilliant, Jay had annual review and he is really doing well (not me saying this but school am still not happy that this should not have happened) Mother calm down!!

Off to GOSH tomorrow with Annabel so a 07.00 start to be there by `

Re storage for feeds etc we have built a bloody "lean to" and I am still falling over the stuff. ENOUGH RANTING YOU OLD FART!!

Giddy you have my sympathies, good luck with the cleaning fsad Enjoy the nativity fsmile

DGD lots of love to you and every one else.
Sleep well little scallywags (ha ha)

isitme1 Wed 11-Dec-13 09:56:06

Sounds like hes on track granny.

Giddy I bet you will be the proudest mum in there! ! Sounds so cute. Its amazing to see where hes come from to where he is now
My niece is playing non speaking angel when she told me it really made me lol fgrin

Let us know how it goes granny and giddy!

I thought ds1 would be biglike me. His dad isnt slimweither but most of it is muscle well4years ago it was lol ds2 is like me hes4months and currently in 9-12/12-18 clothes in his defence he is tall too. 98centile for both height and weight

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