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Yet MORE gastrostomy drama!!! OK, I've had it with this now!!

33 replies

glitteryb6 · 24/12/2008 20:18

The story so far....ds had his button fitted on 5th November, pulled it out on the 5th December, possibly burst his fundo on the 19th December...projectile vomiting again ever since. have had to lower the volumes and he's already losing weight.

Last night he puked up his meds so i knew we would be in for ANOTHER sleepless night, he finally decided that he was getting up at 3am so we lay in bed and watched dvd's, everytime i tried to leave the room he would start whinging/crying so had to stay with him, wouldnt even let me go to sleep!

Anyways this morning i starts stripping him for his bath, take off his vest and theres no sign of the button, found it tucked into the side of his pyjamas, but worst of all the hole has completely closed over and went crusty!!!

It was definately in at 3am but somehow he managed to get it out while watching telly without me noticing!

Phoned the hospital (40 miles away)and they said to get up as soon as possible as a surgeon would need to look at it.

Got to A&E and a surgical resident pierced the crusty bit and started sticking catheter tubes in ever increasing sizes down the hole to make it bigger.

After a bit she got to up to a 12 but could get no more, his previous button was a 14Fr but there was no way that would go in, so he now has a 12Fr button and i have no spare as all i have are 14's. Wont get any till next week.

So have now sent him to bed with a dressing over the top of the whole site taped down in numerous places and his jammies tucked into his nappy!

Think he's trying to tell me something....Do you think maybe he has some type of eating disorder and doesnt want to put on weight?!?

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TotalChaos · 24/12/2008 20:28

oh crikey, not the most relaxing way of spending time for you. hope you have a peaceful time till the new year.

twinklingtrace2 · 24/12/2008 20:34

oh shit no hope yous are all ok now i think he may be telling you some thing there

glitteryb6 · 24/12/2008 20:42

just glad they got one back in! if they hadnt he would have had to go to theatre and we would have been spending christmas in hospital

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needmorecoffee · 25/12/2008 10:11

dd has a 12Fr too.
Hopefully he wont be able to get to it under everything unless he fancies seeing Father Xmas in hospital!
Least with the PEG its un-get-outable

glitteryb6 · 25/12/2008 10:27

Yeah the way he's going i'm wondering if i'm going to be the only person to ever ask for a button to be swapped for a PEG!!!

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needmorecoffee · 25/12/2008 11:11

Peg would hurt if he tugged on it! Mind you, that makes them stop fiddling

glitteryb6 · 25/12/2008 11:48

he couldnt tug if he tried, its more the fast sweeping downwards motion of his arms while in spasm thats pushing the button out cos it sticks up a bit, i thought maybe his arms would just brush over the tube?

Still dont fancy the long dangly bit tho, i'd probably kneel on it and pull it out or something!

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MatNanPlusTINSEL · 26/12/2008 19:08

Could the Mickey be held flush with a stretchy band? like mesh or tubigrip?

glitteryb6 · 26/12/2008 22:15

i'm not sure, i'd be afraid if i put something right round him it might slip and end up catching on the button?

gastrostomy nurse said it CANT be him pulling it out, that the balloons must be defective or something?

i saw some dressing patches in the chemist that have an adhesive edge so i might try them, dont know if they'll hurt pulling them off tho?

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MatNanPlusTINSEL · 27/12/2008 01:01

If they are low adherent they should be easy if dampened first.

cherryc · 27/12/2008 22:40

What a nightmare! Our DD has had a mic-key for 14 mths that has only come out once and she is very active. How much water are you putting in and how often do you change it?

re the fundo - i know it is possible to have them re-done if stiches burst - our DD's fundo has become less tight (i.e. she can now be sick when ill) but is still effective daily. It did however require slow feeding still at first - well 6 bolus feeds of 180mls a day. Is it possible to re-do and feed slower?

cherryc · 27/12/2008 22:46

Sorry just re-read my message and seems a bit like it's things that can be easily overcome - believe me I know it's a battle and hope you can find a way to get it resolved.

Hang in there - you will get your life back XX

glitteryb6 · 27/12/2008 22:55

i'm changing the water weekly, the 14fr i was putting in 5mls, did try putting in 5.5mls once but it made no difference, the 12fr holds 3mls.

i was doing bolus feeds every 3 hours, he cant seem to handle it more often, most he ever took was 4 x 200mls but stopped eating orally and kept falling asleep so cut it back to 4 x 150mls and he was doing fine before the fundo drama.

the previous 2 days he has managed 3 x 150 mls but tonight puked up the last one along with what was left of his lunch, beans etc...VERY slow digestive transit.

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cherryc · 29/12/2008 20:07

Hope you are getting more help from the hosp now the c'mas break is over.

I don't have any advice sorry, we started our DD on 6 feeds of 180mls a day to start with i think now we do 5 of around 200.

I do know people that still had to do constant feeding even after a nissens for a while.

glitteryb6 · 29/12/2008 20:47

we got an appointment in today for the 9th of january for the barium swallow so at least that will show if the fundos gone completely, then we'll take it from there.

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Jollyjoseyjinglebells · 29/12/2008 21:44

Sorry you are having so much trouble....Can I ask a very stupid question....why were you given the Mic-key 1st?
Its just I was told that if we wanted to get the Mic-key that we must still have the PEG 1st for the site to heal and then they can get a better fit etc. It was all a bit over my head to be honest and I was just glad the NGT was going.

cherryc · 29/12/2008 22:04

We were given the mic-key 1st as well and I queried it and was told that if you have a nissens done at the same time you don't have to have a g-tube. Not sure why though sorry!

glitteryb6 · 30/12/2008 09:06

yeah, because he had the fundo.
they do it all laparoscopically, they inflate the stomach to do the fundo so its easier to stick in the button while they're in there rather than go down the way endoscopically for the PEG as well.

think i'd quite have liked the PEG now...less hassle!

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Jollyjoseyjinglebells · 30/12/2008 21:08

Ok thanks, Im still as baffled as ever lol!!! but it makes sense as DD didnt have the fundo, and I just remember consultant saying, she must have the PEG for at least 3months to get an established sight before they would Mic-key her.

Phoned the hospital in a panic tonight as sight had started bleeding,which it haddnt done before....Im so glad all they staff are lovely and dont mind manic mummy midnight calls(even though it was 7pm

How are things going with the feeding just now, is everything staying in place?

glitteryb6 · 30/12/2008 21:18

yeah, thankfully at the moment the button and the milk is staying in place!
just as well really as Homeward cant get any spare buttons out to me till next Monday, praying this one stays in till then!

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TotalChaos · 30/12/2008 21:36

glad you're having less dramas with the little lad! glittery - could you e-mail me at milkfloatquack at hotmail dot com - then I can pass on the e-mail address of my friend with an older DD with a fundo - so you can "chat" directly about any questions you have.

glitteryb6 · 30/12/2008 21:47

thanks! have just emailed you

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Jollyjoseyjinglebells · 31/12/2008 18:00

Well I spent all morning at the hospital, the bleeding turned into a nasty infection over night!!!!

2 sets of Anti B's but at least we are home and dont need to stay in!!

Hope things hold out for your order.

Happy New Year guys xx

TotalChaos · 31/12/2008 18:19

oh no, not how you wanted to spend today I am sure. hope your little one is feeling better now they have started treating the infection.

glitteryb6 · 31/12/2008 20:16

oh no josey thats rubbish eh?, but good news you didnt need to stay in!

we got a new ointment today to try and curb the granulation that sprang up again the last time it fell out so hopefully that'll work as its been bleeding a bit too, knowing ds that'll get infected!!

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