gastrostomy- tube feeding... Help

[fazsaeed]

just been told ds 17 months old will have gtube put in on Monday.
Has anyone had any experiences with it, I'm really worries for him
Thanks

If his lungs are clear they will go ahead. A cold isnt a problem. The aneathatist will come talk to you before the op, listen to his chest and answer any questions you have. dd is always put to sleep with gas (dont get a whiff. I fell off the stool once) Then they put the line in her hand. She hates the numbing cream.

Oooh
I didn't know that. And I've been put to sleep enough times lol. I will remember not to sniff the gas!
I was going to ring in the morning just to let them know that he's still got a cold. Would be a pain if they sent him home because of it. It's nearly a 2 hour drive.

Which hosp does your dd go to?

Bristol. They do all the gastronomy ops for the south west.
When dd has an op (about 5 times a year) I carry her to the theatre (or I did, she's now 8!) and hold her on my lap while they put the gas mask thingy over her face. When she is asleep they put in the line and give her the GA.
Then I go get coffee and fret.
I always question the aneathatist before the op because dd is prone to pneumonia and chest infections because of her quadriplegia but its always the same women and she is wonderful, very thorough and very caring.
If he has a standard cold, bit of snot, bit of coughing, they will go ahead but give his chest a good listen too. And just think your lad will be getting decent calories afterwards and enough water and will start to thrive. Its pretty amazing to see!

Hope everything goes well tomoroow , be thinking of you xx

Thank you summerskye
I feel sick. Very sick. Feel like crying :(
Its very daunting.
Ds is prone to infections so very worried about that.
I hope it doesn't take too long.

you will be fine. At the risk of sounding like a hippy, clean the site with warm water and cotton wool pads (not the balls) with several drops of tea tree and lavender essential oils in. Smells nice and in 3 years dd has never had an infection.
By the end of the week this will al be everyday normal for you
hugs

My dd2 had a g-tube about a year ago now in Oxford. The op took less than an hour. She was only in for one night, which seemed a bit short to me, as I didn't really know what I was doing but turned out fine after some sleep at home in normal bed! I found the whole thing scary too, but like everyone says you get used to it quickly. She has a button now (in fact getting a new one tomorrow).

Kal - does your dd get a lot of hiccups - dd has been having loads of hiccups for the last day, not sure why as she doesn't usually and doesn't get much problem with wind! Luckily they stopped as I was putting her to bed, but not sure what that was all about!

Best of luck for tomorrow fazsaeed, hope everything goes well.

Thank you very much for the support

No hiccups wombat but a lot of wind so we have to vent the tube every now and then. She didnt have a fundoplication fortunately. Probably helps.

Hope things are going well Faz

well change of plan. the consultant has said he wants to see the results of ph probe and the camera then they will go from there.
why on earth did he scare me then on thurdsay???
atm ds got tube down his nose and canula in too.

hes had 5oz all day and is quite happy with that too but im not :|

lets see what tomorrow brings...

Maybe they will do more tests as an inpatient rather than this dragging out for months. Did he give any clue?

nope.
just took bloods. got feeding specailist over tomorrow and another test fundescopy or something
consultant said he wants ds in long term and its defo stay until sunday but they looking at 3-4 weeks of him being here.

you got support? Hope it goes well. Its tough being in that long. How is he coping with hospital?

nope not really. parents come up every other day.
the days in between get really bad.
tests have just shown he still has reflux and hasnt grown out of it.
they have started him on nutrica fortini drinks but he wont really drink them.
im going to ask if he can be put on a high energy milk

you ok?

those drinks are vile. dd was on them so I tasted some. ick.
Im ok, dd has just gone with DH to the Children's Hospice to give me a couple of days break. So feet up and some sleep (she has never slept the night in 8 years)
Hope the problems get sorted asap and the cause found. Poor little lad.

hope you are ok, Ive been where you are ,so hard, hoping things get sorted out ASAp

xxxxxx

you need some rest.
it seems like its the dietician who is actually concerned rather than the gastric people. ds now has a team of professions. we still waiting for ent to see him. dietician (james) has a plan!!
which is a first ( all we've been told about ds plan is they are keeping him in for observations/...)
james has put an action list down. first port of call is the fortini drinks. then nasal feeding tube.

He's back at hosp this time for defo peg as he's eating through syringe ATM.
What do they feed through peg?

Hello ( ive had a name change, I was summerskye)

How is your wee one, has he put on weight? Did you get an endoscopy or anything?

I think they usually use the same feed through the peg as ng, what is he on?

take care

He's put on a bit as I'm feeding him food through syringe like meds.
All test fine apart from ph probe that shows even with meds his refluxing a lot.
He hasn't got the tube in yet. 12th is the date for him to go down. What types of food will he be on?
How's your dc?
X

Hi has anyone. Had a leaky gj tube

Where is it leaking from? From the cap?