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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!
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NinePeedles · 31/08/2012 09:00

Morning everyone!
isitme you need snow boots! Much cheaper than uggs and waterproof.
I hope you are managing to keep your chin up while things are difficult.

I so know what you mean about important days and ending up in hospital! The worrying beforehand is awful and I try not to because I know there's nothing I can do about it.

gallivants Glad the news at hospital was good! And that you had a great birthday!

Ds had a very grumpy day yesterday. At bedtime he had a huge tantrum and bit my shoulder really hard.
He catapulted his chewellry right across the bedroom and nearly garrotted the teddies.
The ironing didn't get done last night; I was zombified on the sofa till an early bedtime!

On a brighter note he slept all night and woke smiling this morning!

Hope you all have a good day!

Isitme1 · 31/08/2012 13:34

Guess what everyone

I have good news for once.

Dh has got his visa!!!! Yay!!!

I finally feel like I have a reason (other than ds) to get up in the morning
Grin
Xxxx

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NinePeedles · 31/08/2012 13:36

So pleased for you! Glad to see your smile!

2old2beamum · 31/08/2012 13:53

HOORAY, hope every thing is now brilliant for you allSmile
BTW I have a wardrobe full of ugg boots (120 pairs) they are really bloody uncomfortable .
Love Granny xx

Isitme1 · 31/08/2012 14:37

And they are thinking about referring ds to immunology dept to get his immune system sorted out.
They took blood as this WBC has been low on 3 out of 4 tests.
They will ask dietician to put dson neocate fibre
And I should get a phone call on Monday about ds results.

I feel like a child lol I've been smiling that much!
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Isitme1 · 31/08/2012 14:38

Granny I have a few pairs of the tasmania flip flops. And I 'borrowed' mums slippers.
I do think they are rather comfy.

How is everyone

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BeeMom · 31/08/2012 16:05

HOORAY on the visa - that is splendid!

We remain in hospital - and are facing that, at almost 7 years old, dd is going to miss the start of the school year for the 5th time (every stinking year).

She has grown a new bug and they have had to pull out the BIG gun antibiotics as this one is multi-drug resistant. Monday night she had a 35 minute long convulsive seizure that didn't respond to rescue medications and she has not returned to baseline neurologically yet, they are having a real time with her blood pressure, too. It is quite low and not responding to treatment. So, it has been a great big ball of fun on this side of the pond.

Me... I am a little stressed.

Isitme1 · 31/08/2012 16:13

Aww beemom
I have no advice to offer but I have got a hug for you

Hope you are getting some rest
and grab a
Brew

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Isitme1 · 01/09/2012 15:58

Hi
Hope everyone is ok
How are the dc?

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sneezecakesmum · 01/09/2012 19:26

Beemom. thats so awful for you and DD. Hanging around hospital waiting for some good news, and just seeing things deteriorate is horrendous. The only thing that got us through the first horrendous days of DGSs life was the 'just get through the next hour, the next morning, the next day technique' and never ever think about the future (that way lies madness).

DGS is 4 tomorrow, and family BBQ on the way yea. Its always tough at this time of the year as we cant help relive the past when he was born, but he is our gorgeous special boy and we love him Smile

isitme. Thank goodness your DHs visa is through. hopefully you will get the support you need. Its such a lonely job having a child who is different. Its only people who have walked in your shoes can really get it.

Galli. you must have caught the same motorway closure (M1 J15-16?) as me? On way home from DBs funeral (sad but so lovely) took me 7 hours instead of 4-5. Glad you had a lovely birthday. Kindles are brill and lots of free books. I am currently reading free wuthering heights (1st read age 16!) love the romanticism. Not jealous of shoe cupboard - told i was wearing old lady shoes by little sis! (flat, comfy and boring!)

Got uggs, kindle and ipad.i am so predictable. 2old...I see you are back to whirlwind busyness now your respite has ended. Batteries all recharged I hope.
xxx

Isitme1 · 02/09/2012 19:16

Sneezesmum hope dgs had a good day today. Weather has been nice up here hope it's been good for you too.

Granny hope yesterday went well.
How are you?

How is everyone?
Gali? Beemom? Starfish? Willow? Bigblue?
Sorry if I missed anyone Blush

Btw has anyone hears from tooloud???

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sneezecakesmum · 02/09/2012 21:56

Thanks isitme. DGS cried at everyone as they arrived - including me! (never does that normally). Though to be fair he has got a snotty cold...... then he vomited all over DD big time.....dont think he is bothered by birthdays Grin

Weather was kind though Smile

Will it take long before your DH gets here? Hope not as you can hopefully share the anxieties re DSs feeding issues. We have a friend whose family came from Pakistan and her DH is so good with their little baby girl who is like DGS (only littler) same sort of CP we think and also has a PEG as she ate nothing. They are a lovely couple and mum is pro proactive with the babe!

Night xx and keep strong.

Isitme1 · 02/09/2012 22:36

Aww I guess it was a typical child's birthday party lol.

Dh should be here with the next few weeks hopefully

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starfishmummy · 03/09/2012 09:44

Hi all, we are back form our holiday to the usual chaos. Stuff still to be unpacked as I fell asleep yesterday afternoon - thought that holidays were supposed to recharge the batteries!!
Hugs to all who need them and yippee to Isitme's dh's visa!!

BeeMom · 03/09/2012 13:08

Well, I wish I had good news - Bee was stat transferred to a hospital 200 km away and is in critical care now. Thanks for all the positive thoughts.

Treating the bacteria either allowed another bug to emerge or caused it - but the culture drawn on Thursday is growing a yeast that has not responded to treatment at all. They have pulled her central line and she is managing on several peripheral IVs, but there is concern about the condition of her heart now.

When it rains, it pours.

starfishmummy · 03/09/2012 13:21

Beemom - I am so sorry to hear your latest update.

Big hugs to you and your dd

Isitme1 · 03/09/2012 13:50

Aww beemom
Hugs.
You and dd will be in prayers tonight.

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2old2beamum · 03/09/2012 15:13

Beemom I am so sorry for you all I know this won't help but would like to say we have been there. Our beautiful boy spent so much time in hospital 150 miles away always 2-3 months at a time. In January 1999 he surpassed himself, admitted for in our terms a small op so 2-3 weeks. 15 months later he was discharged. Numerous times in PICU and once in adult neuro Intensive Care. I didn't leave him as most of the nursing staff did not respect his Hickman Line and he had numerous infections which nearly polished him off so I did it myself
The only thing that kept me sane was to only go week to week Day by day was soul destroying
Keep your chin up we are all thinking of you XX

2old2beamum · 03/09/2012 15:23

Hi you daft lot hope you are all well

Star glad you had a good holiday but when you go away it is the same crap different place no wonder when we come home we are knackered

Grandaughter glad things are not too bad When will DH be home, do you know yet

Sneeze sorry little GGS didn't really enjoy his 4th birthday he sounds like me Grin

sneezecakesmum · 03/09/2012 20:17

Beemom...Sounds so dreadful and frightening. I am beyond coping with stress now, all reserves used up, but I guess you find strength from somewhere Sad

Lean on everyone to get through this xx

Isitme1 · 03/09/2012 22:09

I'm trying to convince him to come over quick.
I'm very deprived lol
He's got a few things to sort out then he will be over.

Beemom like everyone has said we are here for you.
I know we can't do much but our thoughts and prayers are with you and I hope she pulls through this quickly.
Sometimes a good old rant works wonders

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Granny how did Saturday go???
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2old2beamum · 03/09/2012 22:42

Grandaughter thanks for enquiring
It went fine but had to give myself a good talking to not f Grin
There were 11 people in the house and 4 more in wheelchairs it was chaotic;
It was DD4 14 birthday. After party lunch I FORCED them all to
have a long walk along the sea front I was not popular but they admitted
they enjoyed it

I do think the LO's will be ready for school on thursday but am not sure they will be impressed when the transport arrives at 7.25
goodnight all peacefully Hmm
xxx

gallivantsaregood · 04/09/2012 13:04

Hi Everyone: Lots of kiddies back to school today? Good luck to them all and hoping they have lovely teachers.

Sneezecakes - Hope the BBQ went well :) P.S> Was a different Motorway - I am in Bonnie Scotland :)

Beemom:Rooting for your DD here and sending lots of get well vibes her way. Hugs. I know it's hard but try and remember to look after you too. Another one here with LOTS of hospital expereince and know how easy it is to forget asbout yourself when your LO is so poorly. Are you allowed to stay with er or at least in accommodation in/near hospital? xxxx

Isitme: So glad your DH is coming over. I assume he is talking to you again ? xxx

Chocolovinmum · 04/09/2012 15:58

Hi

Been reading your messages and wanted to join in the chat! OD has been tube feed for 7 years we have had so many different types of tubes including nose tubes peg tubes and jeg tubes.

It has been a long bumpy road and still to this day find it hard there is a new challenge every day. There is a support group called PINTS which is for tube fed people there is also a a child's membership called half pint.

Isitme1 · 04/09/2012 19:17

Welcome chocolovinmum
Im sure you've read that to qualify for the group we have to be senile Grin
I'm sure most parents are lol

How have you managed for so long?
Wht tips do you have for us beginners?

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Gali I think he should be here by 25th hopefully.
Are you ok??
Granny how are you?
Great aunt sneeze how are you? Dd? Dgs??

Hope everyone is well
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