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Original poster

dd having her peg on tues

62 replies

Woooozle100 · 28/11/2008 09:13

feel bit anxious about it but happy its the right thing for her. Only fear is not having the fundo and will she start vomiting after feeds. There was post on here a while back about this. (Sorry I sort of dropped out of that thread and disapeared after another hospitalisation and more crappy news re dd)

OP posts:
glitteryb6 · 02/12/2008 11:47

yeah, ds's button is loose too to allow room for growth, had a bit of granulation on the side last week but it receded on its own, however a big bit has appeared at the top over the weekend, doesnt look too pretty but also doesnt seem to be bothering him, still glad he got the button and not the tube tho, that would have been pulled out by now....by accident of course!

ive got the community nurses coming out this afternoon for a look, so i'll let you know what they suggest.

needmorecoffee · 02/12/2008 11:54

wish bristol didn't insist on the PEG first. Means it'll have to be changed for the button under sedation in 3 months. sigh.

trace2 · 02/12/2008 14:52

nmc dd was shaking and screaming when they did this and i said it must be hurting they said no, so now dont want it done again knowing it was hurting her they did try the cream tbh they have tryed alsorts but nothing seams to work! and its massive again now

glitteryb6 please tell when you found out at at the verve of taking out myself

needmorecoffee · 03/12/2008 07:33

join the yahoo tube feeding group. Whole host of ideas for granulation.
I am soooooooooooooooooooooooo not looking forward to finding this out for myself

trace2 · 03/12/2008 09:09

is there a link?

glitteryb6 · 03/12/2008 10:59

community nurse had a look and said that it was just normal granulation, she said the button was a bit loose so was leaking fluid and this plus it moving about makes the granulation worse.

she says they use silver nitrate as a last resort and has prescribed Fuicidin H ointment to try first then if that doesnt work we will try Maxitrol(its an eye ointment which contains the steroid dexamethasone which is an anti- inflammatory agent) before we go down the silver nitrate route.

she also ordered some foamy stuff (cant remember the name) and said to put a cut half way up it to fit round the button and soak up any fluid and to protect it from moving too much off his clothes.

she said after it clears up to just put a dry dressing square round it in the same way to keep soaking up any fluid.

glitteryb6 · 03/12/2008 11:03

nmc, i think...could be wrong though..... that the reason we are having granulation trouble is because we went straight to the button, whereas because you will be having the tube first the hole will be better established when the button goes in so should be easier to treat/might not occur.

at some of the hospitals up here they leave the first tube in for a year to 18 months so maybe you could ask them to leave it longer than the 3 months before they change to the button.

glitteryb6 · 03/12/2008 11:08

trace, forgot the most important bit!

she also put 5.5 mls of water in the balloon rather than the 5mls to make it a snugger fit, which it has done and this morning there was only a tiny bit of leakage.

she said if you try putting in more water yourself make sure you do it very slowly and if you feel ANY resistance stop as the balloon willl be full, but to be fair ds balloon easily took the 5.5mls

glitteryb6 · 03/12/2008 11:42

she also said the silver nitrate shouldnt hurt as long as it only touches the granulation and the good surrounding skin should be protected with loads of vaseline and also to use vaseline when using the steroid ointments so it cant weaken the good skin around the granulation

hope this helps and you havent heard it ALL already...sorry for waffling!

trace2 · 03/12/2008 14:07

glitteryb6 thank you we have tried the eye stuff ,the foam and paddy and even put more water in ballon, nurse been today shrs still not happy with it but chloe as lots of movemewnt in her mickey so we on about taking her of night feeds to try and stop the pulling but chloes lost weight again shes lost 100g not alot but should be putting weight on

needmorecoffee · 03/12/2008 15:20

sat here reading about pegs and it says 'your child's diet will have been assessed to determine how many top up calories will be needed thorugh the tube'

really?
Not happenend.
sigh.
Is Bristol hospital shit?

Original poster
Woooozle100 · 03/12/2008 19:37

nmc - dietician came round and discussed that with us before the op

well its done. Op was success and looking ok so far - no infection. Dd been loads more crabby than expected but think a lot of this is down to wind cos they pump tummy with lots of air. Oh and not getting painkillers quick enough

My advice would be to ask docs beforehand to write up all the painkillers (inc codeine and ibruprofen) beforehand. Cos at our hospital its only paracetamol afterwards (they get lots in theatre recovery)Great if they're not really needed and don't get used but then if they are yr not waiting for fucking ages er a while

Think even more relevent for child with physical disabilities cos as our nurse kept saying 'kids can find there own comfortable position just leave them to it' but not really when child has not much mobility anyway let alone after anaesthetic

Same with wind finding its own way out. Ask them to aireate the peg. dd moaned for hours before I made some comment about wishing there was some way I could extract the wind out before nurse said 'oh we can unclamp it like this and just unscrew...' cue massive forg horn like sound that seemed to go on forever. So yeah - ask em to do this. Before they stick any meds / food down ng

Going to go now. DH at hospital tonight so I'm getting my head down and bank up some zzzzzzzzzs.

All the best xxx

OP posts:
trace2 · 03/12/2008 19:40

ejb1976 so glad dd is ok after op and yes please go get some rest ,you time

glitteryb6 · 03/12/2008 19:53

good to hear it all went well, ds moaned for hours after his op until we flipped him on to his tummy (his usual sleeping position) and he was snoring within 5 mins!

he was VERY windy for the first few days after his op too!

needmorecoffee · 03/12/2008 20:28

thanks for the advice. Will pack our own nurofen

trace2 · 04/12/2008 09:00

dd was on morohine

DesperatelySeekingSanity · 04/12/2008 16:27

This reply has been deleted

Message withdrawn at poster's request.

needmorecoffee · 04/12/2008 20:26

well, surgeons and theatre are ready. All we need is a bed!

needmorecoffee · 05/12/2008 06:14

and its just gone 6am, and there is a bed waiting for her which suggests that it was empty last night too which means I should of had to get up at this unearthly hour....
whinge etc etc

2AdventSevenfoldShoes · 05/12/2008 08:54

good luck NMC, thinking of you

Tclanger · 05/12/2008 09:09

This reply has been deleted

Message withdrawn at poster's request.

trace2 · 05/12/2008 09:12

ill text her soon to give her all our good vibes

needmorecoffee · 05/12/2008 17:27

it went ok. dd is a bit shouty and sore but I've just got back with ds2. To find the boys left every bloody light on and the TV when they left for school earlier.
Saw Lottie, she her her dd were released this afternoon and she set off home.

DesperatelySeekingSanity · 05/12/2008 18:05

This reply has been deleted

Message withdrawn at poster's request.

Original poster
Woooozle100 · 05/12/2008 22:09

glad it went well for you both lottie and nmc. Ooh quite jealous of you lottie for being released. we are still here in hospital am on my mobile phone now hence rubbish typing. dd not tolerating feeds v well and not eating and going hypo so still on drip. pumping 10 mls for 10 hrs is our aim tomit. did 5 earlier. its half milk and water. nutrini milk. aye dieticiam plan is bit off the mark i think. it was for 600 mls on discharge. hmmm. tis v noisy on yard tonight. ni night

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