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

[isitme1]

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

Kidney pain settled! Thank God!

Nurses have been thwy are rather shocked he was sent home as he is still spiking high temp so she thinks he should go back ifhis temp is up in an hour if its not she will come back tonight to check him.

His temp is 39.5 she said dont give paracetamol so hospital can see him at his worst and they will hopefully take him seriously. Think its tonsillitis as he is saying his mouth hurts and im getting it too. Had some more paracetamol

Cn said hosp said they will assess him again but its a massive wait at the hospital. Wtf. I have a baby with me and dh wont be with me I can't be sat there hours for a dr to see him. So ive rang out of hours and will see if they will see him x

how is he now. I know a&e is massively abused by non emergencies. The old fart went there with pain from shingles last year the dr sent him away with a flee in his ear lol.

Lol.
It was the unit they wanted to send him to.
Ive been there before a few times.
Went to walk in centre he was seen as an emergency and he has horrible tonsillitis and his sugar was a lil low but just above when they send to hosp (due to ketones too) hes been given brufen to have for 3 days to help with inflammation and antibiotics.

His temp waa 38.4 with paracetamol.

X Thanks for asking x

We've been away and just back, so glad the little one is on the road to recovery. Endless infections driving us all mad! Enough now.

We are bug free at the moment but almost dare not say it!

Sorry my Lovely DGD for not replying my 5 are throwing bricks at me at present (not too big ones but enough to give ripples on a calm pond )
Hope things are settling down life is so unfair to our LO's and big ones.

Oldsneeze hope you had a good/peaceful break you deserve it......will you be my mum

Am bracing myself as I have to do Annabel's DLA renewal form. Does Emmanuel Syndrome disappear, pleeeeease let me know!!!

Love to all scallywags and you lot! xx

Ds1 is a lil better still spiking temp though.

Ds2 getting bad with his chest.

We had to do ds1sm form again. Came back pretty quick which was unusual. Hes got it again as no change.

Ds1 still spiking temp hes been on antibiotics since Wednesday
Ds2 is starting too
how is everyone

Do you think it may be a virus as antibiotics will be useless. Here speaketh an old fart who is so against AB's given willynilly things Really hope things improve soon XXX

Life goes on here am seriously thinking of changing our house name to
Fitsvilla
Sleep well scallywags give your poor Ma & Pa's a break!!
XX

His temp on Tuesday was going upto 39.8.
Same on Wednesday
has slowly come down but still didn't expect it to go up today (ok its not that High 37.7) I might be expecting too much too soon?

Hope you get your 'break'
I would like a nights sleep myself

Hellllooooo x

Hello! Things ok here at the moment but it won't be long before those snotty kids spreads something else in my direction as I'm sneezing again.....sigh....the minute el gets back to school again. He threw up all that damned formula yesterday. Wish the gastro liaison nurse would get a move on, we want bd in school!

Hope all the little ones are perking up isitme. The fevers are always the worse, and the those bloody fits STOP! 20ld

Hi guys,
Sorry to invade your thread but could anyone here use some Feeding Friends medical retention tape with animal pictures? I bought some to hold my partners nasogastric tube in place as my daughter was very scared by how the tube looked when he was in a coma recently after a stroke. However, thankfully he has recovered his swallowing reflex quite a bit and is now eating orally. We never got round to using the tape and it is untouched and I would love to send it to anyone who would like and use it. Please PM me if you'd like it.

They are taking a long time sorting his bd out in school aren't they?! They need to pull a finger out and do something!

Ds1 is ok apart from eating hes been a total pain and keeps saying mama food tummy hurts. Ds2 is bad with his chest hes asthmatic and we are using the blue inhaler a lot. Might have to get his chest listened to I think.

Acrylic thats a lovely idea! They are really cute. Theres a mum on here whos little boy could so with them as hes ng fed hope she sees the link
x

Just checked its greatexpectation who might be able to use them.
The rest of our lo's are fed via gastrostomy (buttons, j tubes and g tubes) x

Thanks, isitme1. I will pm greatexpectations and see if she'd like them. I think they can be used for any tube that needs taping in place but are primarily designed for face wear, iyswim, so ng tube user would probably get the most use out of them. Thanks for pointing me in the right direction!

Acrylic. those tapes look wonderful, but as isitme says we just have neat little buttons with no evil dangly tubes. So pleased your partner is doing well. I hope you are getting help with the stroke thing and its looking good. The brain has neuroplasticity even with adults and recovery from stroke is looking better all the time. Hope he had timely treatment.

we have a facebook group, blended diet UK and several kiddies there have ng tubes.

How useless am I? So sorry for such little support for you lovely lot.
Things rolling along okish apart from bloody seizures.

Mega wheelchair assessment today for Jay "we shall see"

Jay's jej tube is starting to leak.....I warned them before Xmas that this was a problem. Could change it myself with a bit of support but NO health and safety

Both LO's in respite so off to Gloucestershire to give some support to my lovely cousin some support for her parents (96 and 85 Stubborn buggers) My lovely cousin and DH have adopted 12 and are struggling Am I going to have a break Nooooo!

Hope all you lovely peeps are OK will be in touch after w/e

Much love to you and all your little tinkers XXXX

Don't worry 2old, we know you have a lot on your plate. In fact you have a whole dinner service there!

Adopted 12 . Well done them.

Take care my lovely xxx

Wow adopted 12!!!
Bloody seizures hope they stop soon xx
How is ds's isitme?
Just ticking along here have got a car assessment for el tomorrow have to take him out of school for a while.
Elliot says he wants to go up a mountain, not bloody likely!

Ohh granny I thought thw word rest would sound nice but looks like you dont like it

Eldest is ok, ds2 however is not. After anc I took him a+e as his chest was bad. Weeelll they kept him in for hours on end as his heart rate was up and resps were too. They just wouldn't come down! Think its bronchiolitis again managed to get him home 6 houra later!
Saw renal consultant yesterday hes a lil concerned as bp is creeping up and + protein in wee so rather than seeing mw and consultant in 4 weeks I see him in renal anc in 2 weeks to see if its coming down or not. I've haduti since feb and no aantibiotics! Hes concerned that after I had ds I had e coli in kidneys that was resistant to amoxiclav (I think) and wants to keep a close eye on me. So now I have 1 consultant on a Wednesday and another on Thursday!

In lighter news ive been feeling baby move a lil x

giddy you have to go up a mountain now lol

Oh for the love of all that is fecking holy.

Sorry. Been off-thread - something glitched in my settings and it kept telling me there were no updates. I thought you'd all gone off on an adventure together or something...

Anyhoo, turns out the dietician has prescribed and supplied H a feed which is wrong (as in dangerous, as in gives her cataracts, liver failure and brain damage due to one of her medical conditions) and she has been on it for nearly a month.

Am mad as all hell. Spitting feathers.

Wtf!
If I was you I would get in touch with a solicitor. Thats medical negligence. Surely she knows all about H's medical problems! Will hopefully get them to open theireyes and get a few ddietitians for your area!

And what the FECK do I put in the tube today? And tomorrow? And Monday when I send her to school while I try to phone all the people at GOSH and the manufacturer who might have an answer, but aren't back at work till Monday morning because there's apparently no such thing as an "urgent" dietetics problem?

GAH. I will defend the NHS with my dying breath, but sometimes it tests my already fragile grip on sanity.