Gastrostomy support thread no.2! Tubefed children support thread

[Isitme1]

Welcome to thread no.2!!!

Everyone sign in please so we all know who is here

X

Hi everybody, Life a it manic here (what's new!!)
Just off for a wheelchair appt. DGD not me you cheeky monkey

Granny she wad found dead after falling in the alps :(
Lots of people were bumping threads anf what nt.
Thought I'd spread the word.

Hope the appointment goes well
X

Ds had high temperature and said his tummy hurt.
Just where peg is.?
X temp came down with calpol aftet hour and half
X

hello everyone still so manic here so much different with 2 ! hope the appointment went ok.
I think with regards temps if the respond to calpol or calprofen then ots not majorly bad. does the ppeg site look infected?

The site looks fine itself.

I did thr the thing where you stop it becoming buried bumper too and that was fine. But it shouldn't hurt now surely?

Ds had an appointment with his gastro and everything is fine even though he was speechless when I asked about this pain.
He said
' ds looks frustrated because he cant talk and thats why hes ill'
yh and 3 nights before that he wouldn't go to bed as he kept saying 'want to see more fireworks please mama up and bang'
He told hos grandad to 'take his daddys shoes off' they have the same shoes lol.
He can talk.
Im impresses with how much his speech has come on.
Idiot he is ( the gastro)
I asked if peg needes changing as it was originally being changed every6 months and its been s year sincehes hhad it in. He said 'ring dr xyz secretary and he will tell you'. Felt like saying well shit sherlock hes your patient isnt he???
Absolute d.head.
Rant over.

Its hard with the 2 isnt it giddy.
Sometimes is bliss and at other times I want to rip bloody hair out!
How's el and alex doing x and your mum x

His arms and legs seem to be hurting him too

Could it be flu? It's the season!

Is it a Mickey or mini button they should be changed every 6 months or so.
He sounds like a gem! Can you ask for a different surgeon?

I'm glad that el has taken to school so well, it makes it easier leaving him, knowing he'll be having a good time. And I can concentrate a bit on Velcro boy Alex

Hes been immunised against flu. But I know its not 100%.
Hes not ill all the time its almost like he remembers when he's not distracted

As horrible as it sounds I look forward to taking ds1 tk nursery as I can get sooo much more done.

Ds looks very pale and all purple under eyea but no temp or anything?

X

I think he's a bit of a mystery! Does he sleep ok, I know Elliot develops great bags under his eyes when he's had a bad night and a busy school day.

Yh he sleeps7/8 til 7/8
Unless hes ill and is up needing meds.
I asked dietician and shes coming next week to see him.
Will ring that other dr to see if he will change peg and see if he will take over his care.
How are the boys??
X

Have just written long post but it has gone
Many apologies for my absence I have not deliberately ignored you!! It has been hectic here 6 appointments in 5 days!

DGD I think you are right to change Dr hopefully he will be more helpful I swapped Annabel's Gastro when he kept poo pooing my suggestion that Annabel may have an immune problem Guess who was right
As Giddy says DGGS is a mystery but try not to worry too much (easier said than done!!)
Nice to hear that someone here sleeps please send me some magic!!

Giddy hope you are ok and your boys are well. So pleased he is doing well at school mainstream is so right, DGD please note.

Things bob along here quite nicely Ben's VNS finally switched on neurologist's equipment faulty .
Weather here freezing and windy, the sea was spectacular this morning,

Take care all
XXX

He was crying with tummy pain.
Then passed some hard stool
And then there was green mucus
Then mucus with fresh blood but not from straining and it was streaks within the mucus.
?
Hes now fallen asleep which is unusual for him as he only sleeps when hes ill.

Will ring the gastros and see what can be done x

Granny head is up the bottom and didn't understand what that meant
X

He was crying with tummy pain.
Then passed some hard stool
And then there was green mucus
Then mucus with fresh blood but not from straining and it was streaks within the mucus.
?
Hes now fallen asleep which is unusual for him as he only sleeps when hes ill.

Will ring the gastros and see what can be done x

Granny head is up the bottom and didn't understand what that meant
X

Been busy here decorating and fancying about generally. So pleased bens VNS if functional! Equipment!

El at paed he is 19 kg, no wonder our backs are killing us. He is 50th centile for weight and height for the first time in his life! Yay blended diet!

Must finish off my latest batch of food!

Xxxxxx

Ds2 in hospital :(

Where is everyone
Need some hand holding please.
Ds2s skull is confirmed as different.
:(
Paediatrician said its either 1 bone in skull too small or there's no more room to grow.
They have requested xrays but its not as urgent as his high temperature

Dont have a clue what it means

DGD I am so sorry you are having even more problems.
I really don't have a clue either, I presume you are waiting for blood results, So here are lots of hugs to you all.

Please keep in touch.
XXX

Hes going for chest xray and head too.
Hes got temp that goes upto 39
Think his temperature is due to bronchiolitis
However chest sounds clear hence xray.
Hes up and down.
The dr who saw him yesterday was brilliant she came back to make sure I asked about his head.
She said I will stick him in tanning booth and pass him off as my own lol

Sorry we have been so busy here with endless appts and stuff.

Poor little DS2. He is supposed to be the problem free one so its a bummer

It's not that unusual for the bones to fuse early. Has his fontenelle closed early? Not a major problem so don't worry.

Bronchiolitis is not nice but usually come through ok. At least he is getting checked over and looked after.

Xxx

Don't think its that now
Infection markers are up
Chest clear
Chest xray clear
He's on iv antibiotics
Its not the front its the sides and back.
1 side sticks out and the other is in
At back it dips in anf then bumps out.
She immediately saw what I meant amd gp dismissed me again

Ds1 is poorly too hes got chest infection due to aspiration I think.

Aaarrghhh.
It worrys me to think if theres no space for the brain to grow because the skull camt grow what will happen

Oh dear DGD haven't you had enough.
Can't really add anything except my love. How is DGGS1 coping?
Keep your chin up lovely

XXX

Hes ill.
Dh has had to have time off to look after him.

Trying to get him to pee.
X

I have no idea either, but hope all turns out ok.
Elliot's soft spot closed when he was 4 months old, he saw numerous paed sand they never said it was a problem, Al still has a hole in his head at 7 mo!

Kids are nothing but worry, it's why I've said 'no more' love to all

She mentioned his features being 'very centred' and there's a bit that sticks out on 1 side over his ear (bone) but the other side goes in?
No matter what they say hes still my baby.
X
How are the boys x

Thr paed that saw him last night came back 4 times to check his head and remind me to tell the drs during their round in the day.
X