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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:
sneezecakesmum · 04/09/2012 20:28

Hi. chocolovinmum. Whats an OD. sorry tired and a bit dim and senile!!Grin

Feeling like you with the food thing isitme with DGS. 3 spoons of nice petit filous and aero choc pud each followed by a mouthful of mucousy sick (small amount though Smile ) When he has a cold he is so oicky its untrue and even looking at the fresbini syringe he starts retching! Sum total of babysitting days food - 1 bottle of fresbini! Hope he has eaten this evening, thank heavens for the PEG as I dont need to tear my hair out any more!

2old2beamum · 04/09/2012 21:17

choco welcome As the only one mum who is not daft (don't why they let me in Grin)
As you say it is long and bumpy road I have 2 LO's who are tube fed 1 PEG and 1 PEJ and I sadly know neither will ever feed orally due to their strange anatomy. Our next problem is DD age 7 has to have a colostomy but we will survive

Grandaughter hope you are well and how is my DGGS send him our loveXXXXXX

Galli no mine are not back 'til thursday, spent long time today s are 30 saorting out drugs tubes syringes . Nightmare as we are nearly 30 miles from school however it was our choice so musn't grumble.

Beemom you are in my thoughts love to you all x

Sleep well all you little scallywags give your mums a break.
xxxx

Chocolovinmum · 05/09/2012 09:58

Thank you for the lovely welcome. My little one also has a ilenostmy and a central line so it's def full on....a for coping for so long the best bit of advice I was ever given was you can't change it so make e best of it! Some days it's REALLY hard to do that but I think I manage pretty well.....lol

This morning has been a bit of a nightmare woke up to full on stoma leak...then doing the 25 meds he has in the morning....getting him off his tpn changing tube tapes full bed change to be out of the house at 8.30 for a hospital appointment may need a nap lol.

2oldtobeamum my son is also 7 how are you coping with yours? Mine has so many questions it's hard to know what to say sometimes. The ilenostmy was the hardest thing to get my head round but he has had it nearly 2 years and it's ok

NinePeedles · 05/09/2012 10:13

Wow choco what a start to the day! I hope you get a chance for a Brew and a nap later!

galivants thought I would let you know that the full length IV stand is working a treat! I am so glad I asked for ideas here.

gallivantsaregood · 05/09/2012 16:42

Choco: Welcome and OMG you have such a poitive attitude - Good for you !!

Nine: You are most welcome. Glad it's working :)

2old: Hope tomorrow goes smoothly :)

Isitme1 · 05/09/2012 21:13

Granny :(
Not a good day and I really don't want to startd ads again.
I've made it perfectly clear to H that I need him here quick and he just won't budge.
I had a night long panic attack yesterday night and I can feel it coming on now again.
The whole dying thing.

On top of that i lost my phone :(
X

OP posts:
2old2beamum · 05/09/2012 22:01

Isitme (Grandaughter) just hang in on there and I really hope DH will soon. see sense If he doesn't it is his loss. You have managed fantastically on your own. As I have said before you are a brilliant mum and you will continue to be one what ever happens Loads of love to DGGS from all of us here XX
Hope you find phone soon

Choco I know what you are saying Re TPN, IV drugs plus oral drugs it was such hard work but his smile made it all worth while.

We are still waiting for a date for DD's colostomy but as she has had 2 nasty urine infections I will be glad when it is done.Her ability to understand is not a problem as she hasn't twigged she has e peg (she has Emanuel Syndrome)

To everyone else will send love to all Back to school tomorrow for DS and DD
An awful lot of medical equipmentis needed just for the dayand all the bloody paper work AARGH

Isitme1 · 06/09/2012 04:24

4am and having a bit of a panic attack
So I thought come up here and see if anyone is around???

X

OP posts:
NinePeedles · 06/09/2012 12:48

isitme have just read your post. Poor you! How are you feeling now?
I hope you are feeling better. Do you have any rl support today?

Isitme1 · 06/09/2012 22:36

I feel a lot better tonight
I've had a chat with family about feelings so a lot more better thanks
How is everyone
X

OP posts:
NinePeedles · 07/09/2012 08:37

isitme I am pleased you are feeling better. Hope you had a better night last night.
I had an early night, and no overnight dramas, so feel quite human this morning!
Hopefully it won't be too long before your DP is with you to share the responsibilities. X

sneezecakesmum · 07/09/2012 10:40

isitme...sometimes when you have been coping with incredible stress by yourself, you just keep going and dont get overwhelmed by it, but when you can see an actual end in sight the pent up feelings come to the surface. This could be why you are feeling all over the place at the moment. Try some relaxation therapy tapes, Paul McKenna sends me to sleep every time Confused but they really work Smile

Isitme1 · 07/09/2012 12:10

I just let family know how I felt. Well the women I'm the family.
I know have an evening out without ds next friday. It will be the first time for 2years!
It's a girlies night out. DM will look after him, she said make sure you go and don't worry about ds. She knows dh is being a pain in the backside and I need to chill a bit.
I've been doing a bit of retail therapy and I got myself a new dress for next Friday. Some pants and a jumper dress, ds a new toy and a pair of....

Uggs :) oh yeahhh
I've ordered the sparkly black ones from very

Sneezesmum I think that's what it is. You've nailed it.
Thank you all for being there

Thanks

X
Hope all dcs are well

I hope yesterday went well too granny x

OP posts:
sneezecakesmum · 07/09/2012 19:33

Have a lovely girls night out and DM being a star. Smile

Enjoy the lovely weather this weekend....(it will end next week lol!)

Isitme1 · 07/09/2012 19:39

Glad I've got a lift then lol
How are you? Dd? Dgs?
X

OP posts:
2old2beamum · 07/09/2012 23:14

Hi all, a bit hectic here ----usual domestic chaos. The 2 LO's have settled back into school biggest problem stoooooopid mother forgot to send 1 of his medicines and sterile water in.Blush Got cross 'phone call.
The biggies all went bowling tonight so they are happy but it is a 24mile round trip.
Isitme so glad things are beginning to sort out you deserve it Grandaughter how is my little DGGS XXX for you both.
Hope everyone has a good w/e

2old2beamum · 09/09/2012 11:46

have you all left the country and have left me to turn the light off GrinGrin Hope you are all ok,

gallivantsaregood · 09/09/2012 18:28

Hi All,

Sorry not really been around. Just been a bit busy lately. All is well here for the moment though so that's good. Hopefully going to get DS started at Beavers/Cubs......very scary thought. However my Step-dad has offered to go an be a volunteer (used to be heavily involved with the scouts) so he can keep an eye on DS and make sure he's safe etc. I did ask the leader that if they go camping could I go? He said it would be ok as long as I have police checks etc, which won't be a problem being an approved Foster carer :)

We haven't been having too many appointments recently but I think someone has noticed and the next 2 months are ful of apointments!! Grrr.....

Isitme : You go and have a fab night out!!! :)

Everyone else :Hope the weekend has been a good one and school /nursery go well next week ( and that you all remember to send appropriate medications etc....hmmmmm.) Only kidding 2old. I forgot to give DS his dinner last Sunday cos we were busy Blush Whoops! He survived though. We are human after all.

Back soon I hope :) xxx

Sneezecakesmama · 09/09/2012 20:30

2old ahhh def senility starting with the forgetting.......now what was I doing?

Grin

DGS is fine, getting to the crusty snot part of a cold. Back to nursery without a murmur. Loving the last of the summer out on his trike. He really loves it. The whizzybug is being delivered soon. Wow! Will post a pic.

Given cold to me lol but it's pretty mild so far. DD is feeling more tired and sick with the new bean. Also back ache. Not too clever if DGS is now heavier thanks to peg. Never mind I will lump him around

NinePeedles · 10/09/2012 09:25

Morning all!

It has been a tense weekend; ds has not been well and I have been on tenterhooks in case we needed to rush to hospital.

Luckily he seems to be shaking it off himself, yay!

Hope you all had a calm (haha!) weekend.

isitme how have things been? I hope you are managing to keep your head above water, not long now till things get a little easier.

sneezecakesmum · 10/09/2012 20:18

Ninepeedles. Maybe DS is managing to get some immunity built up?? < ...tells self that kids do eventually stop getting illnesses?...>

Spent all weekend (lovely weather) ragging the garden to pieces Smile Looks tidy at last. DGS has actually managed to attend nursery last week without being ill this week! DD says its because he has antibodies floating around still from his cold. Eating is rubbish though, thank heavens for the PEG. He needs the extra calories, its shocking how much effort he need to put in to do the simplest tasks. Often ends up with beads of sweat on his forehead and little bod like an oven Sad

Hope everyone is OK x

2old2beamum · 10/09/2012 21:22

Evening All
We too spent all W/E clearing the garden out-mind you if we build any more rooms on the back we will only have space to park a bike.
Spent all day in school updating care plans. Apparently they are going to change the administration of Midazolam, just to confuse us poor old parents.
Actually had quite a nice day getting involved with the other children.
Peedles hope you DS continues to improve
Oldsneeze am quite envious that your DGS eats rubbish
How are you Grandaughter and did my DGGS have a happy birthday xx

Isitme1 · 10/09/2012 23:11

Hi all
Hope everyone is good
Gali that sounds like a brill idea!!

Gas I'm sure they do get immune some time or the other?

Granny
I'm here woohoo (waves so you can see lol)
Dyed hair, booked driving lessons and planning on getting theory done next week!
Something to focus on!

X ds had a wonderful birthday!
He said wow wee nice when opening presents! Bless him

X

OP posts:
Isitme1 · 10/09/2012 23:12

Peedles thanks for asking I'm feeling alright ATM x

OP posts:
NinePeedles · 11/09/2012 08:56

Morning everyone!

Yes, immunity very definitely better these days. But it never ceases to amaze me how scaringly quickly ds can go from being ok to being an all out emergency.
He still seems to be holding his own at the moment, so I think all will be well, thanks.

Glad to hear you are chirpier this week, isitme. New hair, new clothes, new focus, it's got to be good!

Happy belated birthday to mini-isitme!