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More gastrostomy drama!

15 replies

glitteryb6 · 05/12/2008 21:04

Ds pulled his button out this afternoon!

Whats worse was i wasnt in, had popped out for lunch with my friend and left my mum doing the lunchtime tube.

Luckily we werent too far away when she phoned so went home to find my mum had him lying on the kitchen floor as he was oozing milk, lol

Had a look at the button and the balloon had a "slow puncture" obviously from the community nurse sticking an extra 0.5ml of water in it to make it a snugger fit....wont be following that advice methinks!

Hadnt been shown yet how to change the button but had a rough idea but no ph paper to check if it was in the right place.

Decided just to stick the old button back in and taped it down and set off for A&E, where the lovely gastrostomy nurse appeared within minutes and watched/talked me through placing a new one so i could do it myself at home the next time.

Actually wasnt that complicated at all, bit of a skoosh really, so im kind of glad it happened as now i feel confident to change it myself which is good as she said if she hadnt been in i would have had to have waited for a surgeon and god knows how long that would have taken.

Took ds to pizza hut afterwards so he was well pleased

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feelingbitfestive · 05/12/2008 21:17

Make sure he doesn't do it again now he knows he'll get pizza . It was probably going to happen at some time and now you know exactly what to do - save you a trip to A&E on xmas eve or some other inconvenient time1

needmorecoffee · 06/12/2008 07:46

really is G-tube week on here isn't it
Thank goodness the PEG can't be pulled out (not that dd could, there are some advantages to a quadraplegic child)
Gonna talk to them about burping through the tube toay. Maybe thats why dd was so screamy yesterday afternoon.

glitteryb6 · 06/12/2008 09:43

ds was very screamy following the op for maybe around 10 hours or so, its catch 22 the more they cry the more windy they get, ds was still very windy for a good few days after the op.

yeah the PEG seems to be stronger, one of my friends was told by a surgeon that you could lift a small child up by it not that he was recommending that of course

maybe we should start a seperate g tube support thread, everyone seems to have one now

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twinklingtrace2 · 06/12/2008 09:47

glittely i to am glad dd came out even after i panked first time as now we know we can put it in. lol are yougiving to nurse to send off? thats what we been told to do

glitteryb6 · 06/12/2008 09:54

nah hospital gastrostomy nurse just binned it, i will be telling community nurse that i think the extra water burst it tho!

i wonder if that means i can wait till march to replace this button now rather than febuary? thats if he doesnt whip this one out too!

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Jollyjoseyjinglebells · 06/12/2008 15:02

Oh no!!has your Mum recovered?!

Least you can change it now though.

The woman we see at the hospital has a doll with a peg in and she takes the leg off so you can see what it is like inside, you would do some major damage if you had the strenght to pull it out.

NMC my dd is also quad and she has managed to pull her NGT out

Jollyjoseyjinglebells · 06/12/2008 15:02

Oh no!!has your Mum recovered?!

Least you can change it now though.

The woman we see at the hospital has a doll with a peg in and she takes the leg off so you can see what it is like inside, you would do some major damage if you had the strenght to pull it out.

NMC my dd is also quad and she has managed to pull her NGT out

glitteryb6 · 06/12/2008 15:22

hey josey, hope all this isnt putting you off!?!

my mum seemed to handle it ok suprisingly, altho to be fair she hasnt done a tube feed since!

ds also quad doesnt have much hand control either and couldnt actually grab it and pull it if he tried....its more the unexpected sudden swipe with the arm you need to watch out for!

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Jollyjoseyjinglebells · 06/12/2008 15:27

No dont think so, cant be worse than the NGT flying out when she is sick can it?!

DD is just 6 months although she is DX quad, she is developing some impressive movements,which are controlled, so have scary visions now

needmorecoffee · 06/12/2008 16:34

Josey - dd can't move her arms at all, not even to fly up in a startle type fashion.
I haven't had the guts to tug the peg yet

Jollyjoseyjinglebells · 06/12/2008 16:39

NMC, did you used to have a different name? I havent been on in a while, DD is managing to reach her cheeks and when sitting can spin some toys and hold her own hands. There is a disc about an Inch in circ at the other side, without ripping the skin wide I think it would be bloody hard to get out, fingers crossed anyway, how is your DD today?

needmorecoffee · 06/12/2008 16:48

yeah, I am also riven.
dd is ok, very very very bored as she is hooked toa drip although I unhooked her earlier and we went for a walk. She's been sick most times they've given her water so her tummy is still sensitive so no food yet.

twinklingtrace2 · 08/12/2008 19:18

nmc and lottie and everyone else hows the pegs, mickeys doing? dd going to see surgen tomorrow been warned he may want to take her back to threate as its still not right

needmorecoffee · 08/12/2008 19:50

she still having problems?

glitteryb6 · 08/12/2008 21:12

trace, thats bad news, hope they can get it sorted soon.

ds granulation seems to be receeding...well its not getting any bigger anyway!
although to be fair i think its more the dressing thats doing it than the steroid cream

i just cut a slit up a folded up gauze square and tuck it under the button and tape it back together, its soaking up all the stuff weeping out and stopping the button moving, seem to be doing the trick for him at the moment.

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