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

[isitme1]

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

Hi everyone, good luck Ilovemonster sounds like your going through a lot I hope things get better soon. I hope everyone else is ok?

We are still in hospital having problems with feeding and oxygen. They have put down an nj tube today in the hope that it will help, so he is now having continues feeds through a pump. They have also changed his reflux meds from ranitidine to emeprazole (not omeprezole) and put him on the max dosage. His reflux has been making his muscle spasms a lot worse so the neurologist is going to prescribe something to help with that too. Hopefully things will start to improve soon and then we can turn down hugs oxygen and come home.

Stupid iPad continuous not continues and his not hugs! Should have checked first!

I was thinking about you today louisa hope they manage to help him properly soon

granny it's all so bloody confusing! Glad your back now. I did think you'd been away for a while.

Giddy and sneeze are you both ok?

Still getting pain. Just have to keep an eye on it

well at least there is a reason for it and you kind of have a plan.

mum still sulking she'll come around soon lol.
im having a bit of an anxiety week. so not much use at the moment
thinking of you louisa x

Its been a while now that shes not been on..
come back sneeeeeeezzzzzeeeeee

hope the anxiety goes away soon. Nothing worse than feeling anxious

Hello computer up and hopefully working.

DGD how are you my lovely please just hang on in there that is the only help I can offer (need to see your notes and examine you)

Louisajane hope things are improving for you and your LO life is a bitch sometimes hang on in there.

Love to all you little scumbags

Notes just say ? Prem labour fibronectin positive cervix closed long or something. They are in the car.

I just want him out now :( dont like all this pain which isback on again!

Hellloooooo how is everyone?
Louisa how is your ds?

Sneeze and giddy and the boys are you all ok?

Granny hows you and your bunch?

Hi everyone how are you all? Ilovemonster how are things with you and baby?

We are still in hospital, the nj tube/emeprazole has made a big difference and he is much more settled. They have also prescribed diazepam for his muscle spasm which is helping too. He is still dropping his sats at night so last night they did a sleep study. Hopefully we will find out now how much oxygen he needs when asleep and we can then go home. There also running metabolic tests but it will be a while I'm guessing before we here anything.

Sorry for mis spellings/grammar running on very little sleep....

louisa I hope you can get some real answers soon.

pains are on and off. Had a few today and yesterday. See consultant next week.

So sorry all for neglecting you all

Life here full on summer holidays can't even fart in peace (what a dreadful comment to make I'm like *oldneeze" an OAP!)

DGD glad you are keeping your legs crossed to keep DGGS3 where he is supposed to be, love to others .

Louisa sorry things are gong on too slowly, DS has Diazepam for painful spasms but also has Baclofen to "loosen" him up. He also has other drugs to relax him but he is much older than your DS.

Jess hope you and those lovely boys are OK

to you all and love to all the little tinkers XX

Hi everyone thank you for all your support, we are home now he has come home needing more oxygen at night and a variety of meds to help with reflux, muscle spasms and his heart but at least he's home. His nj tube seems to be helping but there is talk of giving him a permanent feeding tube once he can roll over.

How is everyone? 2old the heat can't be helping with the manic school holidays.

Ilovemonster good luck with your appointment next week, thinking of you.

Glad to hear your home now lousia hope he stays settled.

How is everyone?

Sneeze how do you make the button pad thingys?

Been getting more pain. Very fed up now

DGD you can buy buddy buttons on ebay cost about £3.50 each far cheaper than from America (worked out £10 each when duty factored in)

Sorry you are still in pain just hang on in there not too much longer nowXX

Hope your extension is coming along Giddy it will make such a difference.

Hope things are still OK with you Louisa and your LO is behaving!

Life a bit busy here but heyho no good moaning

Thank you gran. Will havr a look

its been a while since sneeze has been on..hope she's ok

Hellloooooo

Hello, sorry been neglecting you all I forgot to say I was going away for 2 weeks to Cornwall, have had a good time. How is everyone ? X

Hi everyone, sorry I have not posted in a while we have been getting used to life at home again. How is everyone? Ilovemonster how are you and baby?

I'm quite new to this so I thought I'd give it a go :) I'll introduce myself first. I have a 10 month old little boy whos fed via a PEG and a jujenal extension. He was ventilated at 6 weeks due to laryngotracheamalacia and was found to have an unsafe swallow. He was NG fed from 6 weeks to 6 months and then had a PEG he had severe reflux so had the extension fitted. He has developmental delay due to always being in hospital but is doing well now. He's just started rolling over now but hes still really small. We dont have a diagnosis so we dont know how long hws going to have his PEG or if hes going to catch up. He has a few other issues and has had a few ops but hes got through it. Although hes now started having seizures but as normal hes just on another waiting list. Hopefully some people will be able to relate as ive never met another person with a baby whos tube fed ?? x

Hi all sorry for absence but somewhat manic here 2 LO's at holiday club 30 miles away so little time to spare.

DGS hope you are OK not too long now. Love to my DGGS's hope they are behaving themselves. How are the holidays going?

Giddy glad you had a good holiday in Cornwall (not as nice as Norfolk)

Louisa how are things going it is so hard after a spell in hospital I am always very disorientated and indecisive (spent 15 months once nearly lost the plot!!)

MumToALittleMan welcome lovely group here but totally daft.
My son is Jej fed bit of a pain as it is continuous but we are now used to it.
He is 15 and has been fed jejunally for 4 years and it has worked for him (and us)
DD 9 is PEG fed due to a poorly repaired cleft palate
Don't get me started on seizures I hate them with a vengeance.

Must away medicine time for the scumbags.
Love to you all and your little scallywags

I dont mind if everyone is bonkers :) i would fit in quite well haha. I just appreciate having other mums in similar situations to talk to :) my boy is fed overnight so it doesnt bother me too much anymore. Yeah my LO had a seizure in the hairdressers today the poor girk cutting my hair almost had a heart attack but im getting used to them as well as hes only been having them a month but not seen any neurologist as yet and no treatment. Theyre still not nice to watch or exoerience though! Sounds like youve got your hands full :D

Hi LittleMansMum
Very interested in your DS Just a quickie our DS Jay can only tolerate 50ml
an hour. How much can you give? Mind you as he is coping well would be reluctant to change anything just nosey!!

Hope everybody is enjoying the sun 'til this ?HURRICANE.

take care

Hi. I am giddys mum interfering old bat loving, supportive grandma!

Welcome to littlemansmum . Can I say kick up a major fuss and get your LOs seizures investigated and treated. Some can take a bit of controlling so take a put bull assertive relative with you. If he has a seizure call an ambulance as it will get you to a neuro specialist sooner. I am infuriated on your behalf that they are leaving seizures uncontrolled . We do know a LB who has laryngomalacia who eats orally - puréed food.

Ilove hope you are well and baby? Has he arrived yet?

Louisa. A PEG is not permanent if the child learns to eat safely and so much easier to manage than a ng tube. You can also give proper food down a peg if you are naughty trail blazers like the rest of the blended diet community

20ld...the rain has arrived here big time, just when I bought a heated spa so elbear can do physio and albear can just play! We've had a couple of lovely days in it but now it's sitting in a puddle of rain! Xxxxx

Hi littlemansmum, I'm also curious like 2old2beamum how much you give in an hour, at the moment we give 38ml over an hour.

2old2beamum we are getting used to things now thanks, we had our first trip out all day Friday with his pump. I made my own bag out of cool bag to store things as both the nurse/dietician said they had no bags left to give us!

Sneezecake thanks for the advice, I think it would be better for him to have a peg, also it would be nice to have one less tube stuck to his little face.

How is everyone? Ilovemonster any news with you a baby?