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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 04-Dec-13 15:30:53

Want to be the last one on old thread.
See you all soon folks grin


isitme1 Wed 04-Dec-13 08:32:07

Shiny new thread for us all
Come along to the new home!!

isitme1 Wed 04-Dec-13 08:25:56

Thank you
<bows gracefully>
1 shiny new thread coming up!

2old2beamum Mon 02-Dec-13 21:59:14

Dear Grandaughter the honour is down to you to start new thread.
flowers grin

sneezecakesmum Mon 02-Dec-13 20:56:25

Dont worry and WELL DONE thanks

Its a pity you have to push like this but excellent !!! You are being taken seriously at last smile

Bit scary as far as DS2 but he sounds to be doing very well apart from all the head thing developmentally. And if its just the skull it is sort out able if very scary.

Bit of a crap worrying christmas ahead for you though sad

isitme1 Mon 02-Dec-13 12:07:13

Sorry just read that through and I sounded snappy I didn't mean it like that

I rang cranio at bham again and it was the same person from the other day.
Shes getting someone to get in touch with gp to explainccomplications and that it doesn't cost them to refer and all that.
Plus one of the cranio people rang me and text (went tk voice mail)
So that was nice too. Hopefully get the ball rolling!
Sorry sneeze blush

sneezecakesmum Mon 02-Dec-13 11:10:24

Isitme . I'm not suggesting you leave it shock just don't panic at the moment. Keep doing what you are doing, but I would change your GP. He sounds rubbish.

Is BD completely ruled out with A? The human gut is just not designed for those formula milks and I think they can cause long term problem. Lots of mums say their child has liquid poo or severe constipation on formula.


isitme1 Mon 02-Dec-13 06:33:47

I know its not a sudden thing but my point was if we had left it at theres nothing wrong abd a few years down the line he keeps getting headaches and all that we wouldn't think it would his skull.

Might just take him to that hospital a!+e

Ooh granny
I don't have a clue on what can help.sorry sad

2old2beamum Sun 01-Dec-13 21:22:55

Love the boob tales grin Can't believe Lil bro is nearly 1 year

Exploding colostomy bags angry Madam does have excessive wind and we attach a 2 litre urine bag to the colostomy outlet.... some nights she passes 6 litres of wind! The other problem is liquid poo, it is continuous and Loperamide does help but it is just sticking plaster!! The poo goes solid it has to be removed digitally from the stoma and then loads of liquid fountains out!! WELL YOU DID ASK!!!!
Our lovely gastro is looking at things right from the beginning, have tried her on a full protein milk last week which was a disaster, but will probably scope her top and bottom.

Hope you're not bored to death I am.

Sleep well and love to all XXX

sneezecakesmum Sun 01-Dec-13 20:38:39

Well done isitme for taking direct action. Whatever it is needs sorting. I don't think the pressure on the brain is a sudden thing, just very gradual. I hate all the uncertainty. I have had another cold from the two snot balls called al and el. Not bad though just fed up sneezing.

Hope el doesn't lose any weight with the night feed going but jess hoped it would help with the sleeping. Huh!

Why do the bags explode, is it excess wind? Or just poo?

Love to all and keep well xxx

isitme1 Sat 30-Nov-13 11:10:19

That's cute.
Lil bro is nearly 11months and pulls her boobs out while shopping!
That's why she doesn't take him lol

Giddypants Sat 30-Nov-13 10:57:51

no sign of alex giving up yet he pats my boobs when hes tired and wants feedinggrin

isitme1 Sat 30-Nov-13 08:18:27

Ive emailed cranio help nurse at bham and hes back in clinic on Monday.
I just could not believe gp couldn't see it!!
I fought so hard for ds1 and if wouldn't have he he would not be here as he was so malnourished.
I will not give up with ds2.
God forbid but if it was putting pressure on his brain and started to cause brain damage how would I be able to call myself a mother?
Dh doesn't understand but thats men for you.
Mum has been veey supportive and shes offered to take me to the hospitals A+E to get him into that hospitals system.

Granny I hate the smell of poo. Ds1 has horrible smelling poo envy
<sick face>

Ouch sounds painful giddy. Still really good your breastfeeding! I stopped at 3months as ds2 was too lazy tk latch on and preferred bottle.


Giddypants Sat 30-Nov-13 05:58:16

So sorry to hear about ds2, how on earth are you still sane I would be rocking in a corner crying constantly. It shows you have great strength, but look after yourself too.
Can you get bigger night colostomy bags? Or is it because she is rolling on them and busting them? My sympathies I hate the poonamies here!

I've had mastitis which started on Wednesday night, thought I managed to clear it as the fever went away, but it came back with a vengeance on Thursday I was so cold having rigors and temp at nearly 40!
Mum found me sobbing on the floor thought I was having a break down lol. Had to go to the gp she gave me some anti biotics, and now I'm expressing what I can only describe as cottage cheese blush Alex trying to crawl and breast feed at the same time, he's pulling himself up now, he was weighed last week and is now on the 75th centiles for height and weight.
Since elli hit the 50th centile we have dropped his night feed, we will see if that was a good idea next time he is weighed, right al is being a monster and loosing my post so best go love to all xx

2old2beamum Fri 29-Nov-13 22:12:09

DGD I am sorry you are having yet another problem.
Can't understand why your GP is so unhelpful. Can you not go back to the hospital where LO was last week.
Your posts make me so grateful for our GP who bends over backwards to help. Try not to stress too much easier said than done.
Not too brilliant a week, actually it could be worse!! Since Tuesday every morning an exploded colostomy bag-----in her hair, fingers and toes and it stinks sad Good job I am not pregnant else I would throw up!! OK oldsneeze stop smirking grin
Off to do drugs (not me) wink
Sleep well love to all little tinkers

isitme1 Fri 29-Nov-13 19:41:20

Gp wont refer ds2 to specialist centre sad
Right side forehead now bulges plus
Right side of his spine at back
Plus his foot on that side is going under itself
Plus its bulging more on the right side at the back too

<goes off crying>

isitme1 Wed 27-Nov-13 08:34:34

We don't have heating during the night as the Central heating switch is in another part of the building which getw locked at night hmm
Comes on at 7.30am.
But tbh its not been too bad as of yet.

Just started period (3rd since having ds) and it still scares me seeing all that blood and what not. If I see the tiniest blood clot it puts me off the full day (can you blame me? After ds I hemmoreged due to huge clots)
So will be a bitch all week now.
Must go amd get some paracetamol sad

How is everyone x

2old2beamum Tue 26-Nov-13 20:36:56

My lovely little brother and family are in Houston they keep rubbing it in how warm it is envy
The east wind is vicious here sad

isitme1 Tue 26-Nov-13 20:25:50

My bro is in Australia atm and was boasting about the warm weather.
Im f*** freezing! !

Giddypants Tue 26-Nov-13 19:22:01

My cousin used to live in UAE, and now lives in Vietnam, it looks so gorgeous, but like you say the health care is a priority for us, the grass isn't always greener x

isitme1 Sun 24-Nov-13 16:27:18

I know granny and giddy.
we are a right messed up lot arent we lol
Im kidna realising shit im no longer a teen but im a mum to 2 beautiful kids, feel so much more older now that we are house hunting too.

When I was staying at dh home country it was absolutely amazing. If dc weren't 'ill' I would definitely move over for good. Its so calm and relaxing. I feel happy there but the drs arent the best there so id rather feel a lil shit and have him seen by a few good drs than feel a bit better.


2old2beamum Sun 24-Nov-13 15:26:39

No Giddy and DGD it is my major worry..... who will love them as we do????

Giddypants Sun 24-Nov-13 15:19:38

isitme, I thought it was just me who had the irrational i'm going to die of something and leave my 2 behind where they wont be looked after properly. I think that is where my whole anxieties stem from, you know I think you and me are 'normal' lol

im all for moving somewhere nice in the winter, maybe new Zealand, then back again for the 'summer' here, if I had the money to spend that's what id do!

El keeps signing 'toilet' but when we stick him on he wants to come off, I think its because he wants to read a book, which is his reward for doing something on the loo, don't think hes quite realised that he doesn't get a book for not doing anything, so it toilet, toilet, toilet!!!

I may be coming out of the rain cloud here, and everytime I do I think that that will be the last time, it never is. I will get it sorted x

isitme1 Sun 24-Nov-13 10:39:53

I think jess is rather stro for talking about jer anxiety to hv.
I dont have the balls to do so
I dont want antidepressants again.
They made me feel so horrible and numb

Atm ive got both boys laughing at me as ive got the hiccups blush

Granny they both are amazing.
I was watching the Simpsons last night (comedies help) and one of the characters shouted 'I love boobies'.
Ds them repeated mama I love boobies I love boobies boobies lmao blush

I have bad panic attacks thinking im going to die and leave 2 boys who need me behind then I try and calm myself down by reminding myself of what I've been through and that im stronger than that

Were a soft bunch really lol.
I really think we should all move to a nice warm countryqwhere it doesn't go dark at3pm and we will all feel better grin
[sunshine] is all we need

2old2beamum Sun 24-Nov-13 10:31:37

Hi like you I am absolutely gutted over the cricket, smug pigs!! And then the rugby sad And Norwich lost!!!

Glad you are OK hugs to you lot keep smiling XXXX

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