Gastrostomy/ tube feeding support group...

[Isitme1]

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

Aww glad you had a good time!
It's also wonderful to hear dgs did too!

how's the secret pg daughter doing? Hope she's well too

They were really happy for him!

Had a bit of a conversation with him this morning and he seemed to understand basic things I was saying.
He can now point to his nose, eyes and ears!
We're working in tongue lol

When are you heading back home?
might have a but more company then

X

We are all home now but had such a lovely time. Wasn't a bit sad to see my DDs cousins nearly 2 year old running everywhere and able to say a few words. Usually the difference between DGS and other kids is hurtful, but my family are so lovely they just take DGS on board without batting an eyeball. So supportive in a difficult world. It's what makes families so good .....that little safe bubble of acceptance.

That's wonderful that your DS is starting to speak and more to understand what you are saying. Meningitis and birth damage can make the early months a bit of a washout for little ones. DGSs traumatic birth practically wiped out any chance of progress for a year. Xxxx

Glad your home safe and sound
I know what a traumatic birth looks like. They are not nice. However thankfully ds was not 'really involved'
I hope your dd has an easier time this time round.
I also hope your not stressing out 'too much' not like it's really possible

Its ds birthday next month. Hmm still very confused on what to get him. He's not too into his toys and the amount we have I don't think he needs anymore!
I do want to get him the wotwots zoom toy.

How is everyone if anyone else apart from me and sneezecakesmum is there
x

Sorry to disappoint you all I have not died evil
Spent most of yesterday at the hospital with DD another urine infection temp 39.8.
Did write last night then computer locked so went to bed.

Isitme brilliant news about DS and speech you hard work is now paying off well done mum!

oldsneeze glad you had a good break in my beautiful county. No the old hag in Hunstanton was not me, I am Cromer's old hag. Pleased your relatives 2 yr
old didn't phase you but it is hard sometimes DS does so little just 3-4 onbody signs but he has a beautiful smile. Sorry if I sound grumpy but have just had a 'phone call from SS re letterbox contact his wonderful birth mother has complained that I don't tell her enough! Infact I don't legally have to write to her at all ( just to G.Parents)-I do it out of kindness shan't bother in future.
Now you all know how horrid I am. rant over

Hope you are all well xx
for your LO's XX

Aww poor dd, uti's are horrid.

Tell the silly bitch if she cared that much he'd still be with her on the plus side it's good he's with you as he has someone who actually cares and you have the benefit of having known all his wonderful moments!

Ds is not doing too bad.
He keeps pulling on his button. Think it's irritating. He had swabs done last week and they can't decide whether he needs antibiotics or not.
I think the fact that they are questioning that after seeing his results it's obviously not clear so before it turns nasty start the course of a.b.
Hope you are having a better day today
All of you not many of us left

I know gali is on hols
But where's tooloud gone. I do hope her lo is well
What about starfish and sub?
Anyone know how kal is doing?

Sneezecakes and sneezecakesmum are you and dgs and dgc well?
X

Isitme you are so lovely for starting this thread.
We must keep it going.
Hope the quiet ones are OK
You are right DS birth mother should have put her sons before crack and heroine. But why oh why after removing 2 DS's did SS let her keep a new born baby "give her another chance" syndrome. Pity you were not his mum.
He is so beautiful.
Sleep well I am gearing up to watch my pin up Usain
xx

I believe all kids have a chance.
I saw a teen in a wheel chair with carer and he was so happy. His speech was sloppy but understandable.
He was really happy. Bless him.
Thanks for the flowers

Don't understand ss. They scare me as they seem to do the opposite of right.

I soooo need to watch Olympics

Hope all are well and yes we will keep this thread Alive!

X

I think as the weather has been kind for a couple of weeks and its school hols people are out enjoying themselves. Apart from my sad old self of course - so not got a life!

Isitme. WELL SAID re 2olds DS. I did a few bank shifts on the SCBU (only let me loose on the ones who were nearly home, so don't worry!) and I could not believe the lengths SS went to keep heroin addicted babies with their shit mothers. sorry but they would be late to visit as they had to score their drugs first

Been out spending money on garden furniture, even getting the old fart to put his hand in his pocket!

DD and DGS are fine so far. DD having an early scan tomorrow as mc in the past and having a bit of a niggling pain r side. Me, I am convinced of disaster but I am worry central

I do hope things go well for her And that the pain is just 'pain of pregnancy'
Dm has had 3/4 mcs and they have almost destroyed her.
She is currently at the same gestation as she was with her first mc. It was a late mc had she lost a lil boy

Dh is a youngfart. He doesn't mind him spending money in me but doesn't want me spending money on him
Bet your garden looks lovely. Think we should come over for tea

[hugs]
Hopefully everything will be fine. I've been taught that God doesn't give us more than we can bear and everyone happens for a reason. If dm would of had db then she wouldn't of been able to look after her mil who passed last year.
That doesn't mean it's going to go tits up though!
X

oldsneeze snap Iworked on SCBU/NICU for about *102 years absolutely loved it adopted DD1 was "unwanted" and was left there. I took him home the rest is history. But yes I saw appalling practice and then the poor little buggers were in foster care having been neglected and abused for 12months+
My old fart has moths in his wallet enjoy your furniture
Try not to worry yoo much about DD I wish I could say all will be fine.
Isitme forgot to ask about your Mum it must be so hard for her
hoorah for Usain not interested anymore
PS * only 11 years

Sorry I have been quiet, dd is unwell - in hospital and septic. I read every day, but just don't know what to contribute right now.

I think of you all often, though.

BeeMom Nice to hear from you, sorry things are not so good for you. Let us know when thinbs improve, take care

Beemom ditto to what 2old said. Hope things pick up soon.

2old thanks for asking about mum" she's doing fine touch wood
She's off the heprim injections and they are telling her she will have prem baby.
But both mother and baby are doing well.

Wow. 2old I wish I had experience like you do. C'mon we want to hear some stories now! please

Stupid CN came over to change water in ds button and they bought the wrong syringe. She said o I thought it was this one :|
Even I knew they are smaller syringes that are used!

X
How is everyone's day going?

Beemom I hope we're keeping you entertained :)
It's hard being n hosp
X

Quick question to all wiser than me mothers
Why is ds' sick yellow
He has been sick 3 times this morning.
Not on an empty stomach either so i don't think it's bile.
I did give omeperzole but that shouldn't turn everything yellow when the med itself is white

Look forward to putting my mind at ease with your answers
X

Are you sure it is not bile because it can dam back into a nonempty stomach, I am not joking is he pooing and farting. Save a puke if he does it again and seek advice and take puke with you. Don't forget it is friday. xx

He's constipated. He's not been to the loo for a few days. Hmmm about 3/4 I think. Before that he was pretty loose.

CN said he needs to see gp
So he's got appointment for this late afternoon
X

Good, I feel happier now you are going to see your GP. Hope he knows his stuff.

:)

He's had some bowel movement (sorry tmi) but not am awful lot I dont think. Quite hard bits of food.
He had the potato out of chips in his tummy for over 16 hours!
Which even I know thats not normal
X

He's had BM
Gp said its due to constipation
And to give lactose everyday without fail.
Hmmm

How is everyone
X

Beemom. Love and best wishes to your DD and you. It all sounds so incredibly hard. Hate the sick kids part of CP and all the rubbish that they have to endure.

2old for neglected kids. Saw plenty in inner city (very deprived) as A&E nurse (only 3 years ago!) When you think of how we move heaven and earth for our much loved disabled children and some are awful to physically 'perfect' children. You just cant see all the mental disablement these parents are causing.....is that a real word?

isitme. your little one is a martyr to his digestive system! We nurses not phased by bowel talk in the middle of a meal DDs one too! (ICU so stuck up little madam)(not really)...she had a scan today cos of niggly pain and 6-7 weeks in the right place and with a heartbeat. yet another freaky scan picture to oo and aa over (not in my case!)

Funny story to cheer you up. My son (grown up ish) went to his young friends funeral today with a couple of friends. Couldnt understand why no young people were there, but saw (he thought) 'dan' on the coffin. couldnt understand why an old ladies photo though? Anyway realised it was not dan but nan and they were at the wrong funeral!!! Went to a pub and it was an informal after wedding do. So managed to gatecrash a funeral and a wedding on the same day! This is absolutely true and typical of DS who has a touch of ADHD!

I told you so
It's very nice to hear she's doing good!

Lol
That's what I call a 2-4-1 :)

How are you sneezesmum? Dgs?

How's everyone else
X

Oh and DGS is now 2-9th centile weight and same for height thanks to PEG. DD and her DH rattled a few cages and the SEN assessor agreed DGS had no mental disability so out went the GDD crap (which has never been mentioned prior to the statementing process) and made us all livid. Agreed he was delayed only because of the CP. Teeth (whats left of them) are fine! 4 appts yesterday, physio this morning and scan in afternoon, poor old DD needs a rest

Oldsneeze your story cracked old fart and I up, on my behalf it is NHS black humour!
Glad youngsneeze's scan was not bad news BTW ITU staff are not stuck up I worked on PICU for a short while.
you are right medical peeps do not find bowel talk difficult at meal times.
Have got my strop over DS's bloody BM (not bowel movement) but fail to see why SS didn't intervene earlier and remove him at birth, and your comment on neglected LO's I could discuss for hours.
Isitme glad DS is OK we have to give Movicol to DS every day to go, and DD needs Immodium to stop her pooing. Ah well
XX

Aww what's brill he's getting somewhere with the peg.
Ds seems to be in pain with his
Keeping a very close eye on him

X

Xposted with 2old

CN was very nice today, she talked in official nurse language makes me feel like she actually knew something and she said if he is still having episodes like this his meds for constipation needs to be changed

C'mon 2old and sneezesmum we want stories!

X