taadaa shiny new gastrostomy support thread no.3 tube feeding support

[isitme1]

Taaadaaaa
Welcome to the new thread! !
New and old are welcome here

42kids! Wow!
Well done lol

shiney always had a bit of a prob with them. Dont think they like dh too much. They probably expected me to marry ken doll like billionaire lol.

What cake did they have?
No one here can bake ds a cake
Cant buy him a fancy cake.

So im doing cake and bought lego mould for some toppers for him. Was thinking of making lego head with toppers on then thought maybe a tray bake or one of them small round cakes with loads if layers?
Will stick some rolled icing on top and then the toppers? Better than nothing.

Ive run out of omperezole we have the ready made one was supposed to pick it up Friday but figured been told to stop it so can wait until Monday. Will email them tomorrow anf ask.
They want to stop omperezole as apparently it creates a nicer environment or something for cdiff.
Hes ate 1spoon full of sweetcorn this morning and 3bits of chicken this evening. And nothing else. Hes definitely not feeling very well as he keeeps refluxing.

Gave him some paracetamol but thats not going to do much.

hope he poos by morning! Need to drop sample off tomorrow lol

Hard finding a cake due to his allergies otherwise I would have had one made for him.

Doesn't sound too bad. Hope the cleaning up after doesnt last too long!

We will decorate the rooms the night before his birthday so when he wakes he will be super excited. Will record it too lol.

Dad isnt too bad he works 6am-10pm with little time to do much in between.
Mum however.
they dont get invited to anything.

Mum, bro n his family went Blackpool too see lights. We live across the road. Askingdoesnt cost aanyone. The original plan was all of us go.

Arghh ds has a temp.
When he woke up I could tell something was wrong but couldnt tell whay exactly.

His temp isnt too high 38.
hes just very off in himself. Says his chesthurts eyes look dark uunderneath them.
Hes very bleary eyed iyswim.very irritable too

just cant pinpoint whats up with him.

Poor lil mans reflux is still bad

Just dont bloody it get it with people like that!

Their loss. Not ours.

Dont know what to do with him. Something is obviously bothering him. Looked into thr back of his throat and its not tonsillitis.

Wwyd? Dh is out. Theres been a funeral. So hes gone there otherwise I would have been at ooh.
Might take him once hes back if its a reasonable time.

Pump is on nearly 2hours per feed. Usual is 1hour.
He needs water feed on tonight but he needs to be with us too so got to bed as late as poss so he can have some water on first. Dont trust myself to sleep next to him when hes on his feed.

Really need a cuppa.
ive started a new diet lol.
Im eatinf around 900 cals a day. Nearly on 3rd week. Doing well. Dont miss food that much. Just need the caffeine lol

Back from ooh.

More antibiotics.

Hes now om vancomycin, co amoxiclav and cefalxin.
he suffers with ulcers in his mouth and a few had spread to bos tonsillitis both are infected.

cant go to sleep until his next antibiotic at 12.

His temp 38.7 most of the day been on and off.

Aww glad it wasnt too stressful for them.

Hes still not ate anything more than 2 bites of chicken.
These kids arent easy lol.

On the plus its the first time in probably a year or so that ive fully dried all my hair lol

His feeds are 1000cals. And he was eating ok for him. Still lost 1kg. Feeds increased by 100cals so an extra 700 over the week

Makes it easier as a parent to see they are settling in well.

So hes had temp most of the night and this morning. Hes not got runny nose or anything like that either

Will be busy decorating the room tonight and baking cakes!

Ohh no shiney.
Hope they manage to get him feeling better soon!
Will carry on checkimg back for updates.

hes still getting temps just watching anf seeing how he goes really.

Took him to smyths today. He was absolutely loving it lol. Took him toys r us on Monday too to pick presents.

yep hes missing first bit atm.

Got his cake in the oven. 3rd batch and seems better than before!
Dairy soya wheat nut egg free cake
consisting off
banana
apple sauce
Sugar
wheat free self raising flour
vanilla extract
water
oil
and some vitalite.

Very nervous!

Really do hope he picks up soon for you x

3rd time lucky hopefully! Been trying to post all day!

How is he? Hope you've got to the specialist hospital and they've started proper treatment

cake has turned out (looks wise) better than expected. Will let you know how it tastes later lol.
have been thinking about you both all day. Hope theres some improvement soon x

wheres everyone else gone?

Bless him.
I hope that cocktail of drugs help him!

The cake was shit.. but then it was made from a flour mixed from potatoes anf rice so obv not a real cake. The presentation was wonderful. Taste

have you got a bed by his side?

Senco has tried making snarky remarks in the past about his attendance. Htf do they expect me to send a child in with a temp/not tolerating feed/vomiting/clear out from constipation?

Ive emailed saying dont forget about the low iga levels which is why he keeps getting ill.
And if hes in school more he will get ill more

he loved it all apart from one bit- no one got him a number5 card lol.
I said postman is bringing in the morning he got a littlw late today! Will pop to local shop in the morning

how is he doing? How are the others doing?
Do keep topping yourself up too

Ive not met the school nurse as of yet which I did think I would have by now.
No ones ever mentioned her either.

How is he this morning? Hope hes a little better than yesterday.

Middle one has started nursery and he doesnt even turn around to give me a kiss lol he just runs off to play!

How is he doing this morning?

Was really busy yesterday didnt get chance to come on.
Had to do the 3hour trip again to the hosp for his meds.

Will definitely ask about the school nurse

Glad hes now on a ward!

It's his first full day at school today. He needed a feed on too. Very scary giving someone else who has only had an hours training to do his feeds!

got his clinic letter today.

Normal calproctectin is