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Gastrostomy support thread no.2! Tubefed children support thread

(973 Posts)
Isitme1 Sun 25-Nov-12 14:44:35

Welcome to thread no.2!!!

Everyone sign in please so we all know who is here


2old2beamum Wed 11-Sep-13 21:03:05

Welcome to Vomit Villa grin
Annabel puking for Britain only Diarolyte since Monday but still manages to puke so since lunchtime introducing diarolyte at 10 mls/hr and increasing slowly now on 50mls/hr so fingers xed.
Had to cancel Jay's appt at Nottingham due to this.
3 Oldest at friends house because of appt and still wanted to go as Liz does better wraps for packed lunches than me sad

So glad Elli loves school and thanks for blended diet (show off)
Glad Jess foot ok no thanks to you oldsneeze she had more sympathy from me and I am a hard hearted bitch grin

DGD hope things are OK for you, have searched my brain and I remember LO's with CMPI and we fed them a feed of Commuted Chicken (it was revolting) but it worked....Just a thought Love to my

Goodnight may we all sleep well (hope all Scallywags are listening)

sneezecakesmum Thu 12-Sep-13 19:28:09

An actual gastrostomy comment coming lol grin

Jess is having to give el movicol sad as he is having mucky formula at school at lunchtime and she doesnt want to get back into the constipation rut!

We will call the gastro surgeon to see if they can give us a date for the mini button so we can give BD at school (heard very encouraging noises from the dietician and nurse smile

Isitme1 Thu 12-Sep-13 20:44:43

Yuk hate movicol.

Granny hows annabel now?

Ds has had cucumber all day hmm.
Need to get out to get fresh ingredients and start cooking stuff he can have and will eat that's the hard part

he poo'd
Now its mucus and old blood plus cucumber
Such a relief to see he had poo'd

Us mamas are easy to please lol


2old2beamum Fri 13-Sep-13 20:47:41

Bloody computer 2nd post [anger]

So glad DGGS has pooped as you say very little easily pleases us Mamas

Annabel finished puking Weds night but has temp 40 so now on AB's. Asked if I could have a bed in local hospital GP laughed in my face cheeky buggergrin love him really grin

Oldsneeze have lit fire for last 4 nights.

Love to all sleep well you little scallywags for your parents!!

isitme1 Thu 19-Sep-13 20:01:17

Where is everyone?
Ds has pain at gastrostomy site? Any clue?
His gastric consultant js fully booked until February and we managed to get am appointment for January. Would likr an earlier appointment but secretary saif hes fully booked. He is still clearing out all that crap

Will see how he goes.
Ds2 almost always has diarrhoea? Really runny yellow poo.
He sees dr tomorrow so will let them know

How is everyone? ??

sneezecakesmum Fri 20-Sep-13 11:18:42

Qepfx,vkcnp,2'\214n n

The above is an example of a download called keyscrambler which scrambles letters when you type in bank details. It is NOT supposed to be on MN!!!

Anyway off the geeky stuff....we are all fine and getting used to school and all the free time! DGS loves it and is the most popular child in class as he will laugh hysterically at the silliest things kiddies do (can see a slight problem there shock)

I think yellow runny poo is normal in a breastfed child. Even though the word normal is one that has fallen out of our vocabulary a long time ago!

We have a date in 4 weeks for the PEG changing to a mini button. A bit scary but it will pave the way for having blended diet in school. Maybe via a pump but hopefully plunged. Scary though. More bloody hospitals.

isitme1 Fri 20-Sep-13 11:53:29

Awww so he's settling in well.

Normal. Yep tore it out afterds1 lol.

Pulled his gastric contents out this morning (vent then pulled) I got some fresh blood plus old coffee ground blood (defo blood as it was empty stomach)
That plus pain=? Any ideas please
Have rang his gastric dr but hes not got back to me yet.


sneezecakesmum Fri 20-Sep-13 20:02:04

I am sure he has some severe gastritis which is causing some surface bleeding leading to this old blood (like coffee grounds) and he may even have some small ulcers. All due to this horrible inflammation of his stomach no doubt. I am not very clued up with reflux etc as its one of the things el really doesnt have. He has a loose muscle at the top of his stomach so pukes easily but doesnt have pain and all these problems with reflux. No idea about what works sad

isitme1 Sat 21-Sep-13 03:57:07

It happened so many times yesterday yet dh wasn't concerned and I was in tears. Just made me cry as he soliders on and isn't really bothered about pan unless it's t

isitme1 Sun 22-Sep-13 09:24:21

Its happened again today but literally just specs. 1 black spec and around 3 coffee ground.
Ds is saying his tummy hurts.
Will see what hes like x
Gastro on call said if its the same today then he will sort something out.

Giddypants Sun 22-Sep-13 18:42:14

hi isitme don't worry about the runny baby poo alex would always be runny as long as he has wet and dirty nappies and is putting on weight is bright and alert. then he is ok when alex got to about 3 months or so he would save up his poo to one a day and just explode everywhere it would literally be dripping out of a leg holeshock
hope ds1 is feeling better have they said he has ulcers before?
hope your scallywag s have stopped puking now 2old love to you all x

isitme1 Mon 23-Sep-13 07:12:22

Yup your mum said the same too.
Took ds to hospital yesterday they did bloods and were supposed to ring me back. They said unless blood shows hb is low then they can wait a week or so to do endoscopy, if they are low then sooner.
I really feel like theres more to ds than meets the eye and these numpties don't have a clue.
Aibu to ask for referral to gosh?

isitme1 Mon 23-Sep-13 07:13:14

Ps ds2 is half the weight of ds1 shock

sneezecakesmum Mon 23-Sep-13 19:19:38

I would ask for a referral to GOSH. Can't do any harm smile

2old2beamum Mon 23-Sep-13 21:20:49

Hello all,
Have been away for a few days glamping grin It was ok but I am exhausted. But would do it again the oldest 3 loved it!! LO's in respite

DGD sorry to hear of DGGS's ongoing problems, You could ask for a referral to GOSH but isn't there anywhere else nearer.
Agree with Giddy most BF babies have loose stools there is a medical reason why but can't remember blush

Puking has stopped Jay and Ellen missed it.
I am sure Jay's immunity is crack hot after spending 5years in residential care!!
Hope the rest of you are well
So glad Elibean is loving school and good luck with Mickey.

Love to you all and all Scallywags SLEEP WELL and give your MaMa's a break

isitme1 Tue 24-Sep-13 10:02:40

We are currently beint seen at the 'centre of excellence'
All brand new children's hospital but they haven't done anything for him
Thr gastro on call was shocked that we weren't given a gastro nurses contact number and hes had it in 18months!


sneezecakesmum Tue 24-Sep-13 14:21:38

20ld. Glad the glamping went well, I think you were actually lucky with the weather for once! Pleased to hear the LOs are on the mend a last. Think ellibean must also have a good immune system, but its also good food as he shakes things of fairly well at the moment.

We've had a gastro nurse since the peg!

isitme1 Tue 24-Sep-13 18:00:11

Nope not had a contact number.
On Friday I rang to speak to gastro on call. The hospital telephone switch board doesnt allow patients to speak drs like that but I managed to blag my way through and got in contact.
Today I rang his gastro and his secretary said the dr who was in his gastros place ( his gastro comes bk tomorrow) said she doesn't knoe what to do and she will speak to ds1s gastro tomorrow so thats at least 5 days of bleeding!

isitme1 Thu 26-Sep-13 11:21:02

Atm questioning crohns or colitis x

isitme1 Fri 27-Sep-13 22:45:30


Anyone sad

Ds is pooing full on horrible jelly like mucus poo

isitme1 Sat 28-Sep-13 12:36:18

im all alone theres no one here beside me
As said by donkey when shrek left him

No im not implying either of us are the donkey or shrek lol


2old2beamum Sat 28-Sep-13 16:55:34

Don't know about being a donkey but am running round like a blue arsed fly.

Yes we are here, am dealing with disgusting foul smelling exploding colostomy bags 4 today! Weather forecast says breezy along East Coast, there's a bloody gale blowing here shock

Hope all are well and not too busy.

Poor little DGGS1 hope they sort him out soon.


sneezecakesmum Sat 28-Sep-13 22:36:46

Busy here too. Trying to get house redecorated and sorted after 5 years of neglect! Busy and now very tired...

Night xxx

Giddypants Sun 29-Sep-13 10:04:14

Have they suggested crohns or colitis or is it something you've been thinking about?
I think a referral to gosh would be a good idea, he is obviously not been looked after at the place you are. Maybe they could get to the bottom of it.
How it he today? Has he ever had a normal bowel post his meningitis?
How is the baby?
Alex gets neglected at the weekend as el has to do so much which they don't do in school. But he gets the attention through the week, I feel the guilt but there is not much I can do about it.

House is upside down as dh has been off work since Thursday and half way through decorating the hall, I asked him to help get some filler off the banister so I can redo it properly and paint it, we'll he got his mits on it and I've had to rebuild the whole banister, never again!

isitme1 Sun 29-Sep-13 10:58:02

Lol@ having to rebuild! Men!!!

That's what im thinking it is either of the2.
His bowels did change around that time. ..
Ive been speaking to a dr on mn and they said it could be the autoimmune side of crohns as he's had meningitis or something along the lines of that!
Hes irratible today. But we were out yesterday and he had food with 'milk products' in and we should be avoiding it but it's hard to say no when theres nothing other for him to eat that he likes. He dkd really well eating yesterday

Granny hope you get some time to yourself soon

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