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well ds had his videofluroscopy today and.....

12 replies

glitteryb6 · 09/01/2009 18:02

apparently it looks ok!!!

they gave him 150mls of the barium through his tube and xrayed while they moved him about then announced it looked fine!
i asked how then was he able to projectile vomit at least once a day, they said i'd have to talk to the surgeon about that.
i left kinda feeling like they thought i was some sort of neurotic mother who was imagining things!

anyways gave him his milk then came home and had lunch and he fell asleep on my mums knee.
had been sleeping for about 10 mins when he woke up and started puking, luckily i always keep a tupperware tub handy so gran was holding him and trying to catch the puke at the same time.

as if on cue the dietician appeared at the door for his monthly weigh in which was fab as she witnessed the projectilness!

it consisted of barium, milk and his lunch so she could see it had came from his stomach
ie thru the unburst fundo?!?

she reckoned it looked about 200mls worth and i told her it was happening every day and he was only tolerating about 400/500mls of the nutrini pepti at 1 cal per ml.

his weight was down to 11.3kg from 11.7kgs,
so we're going to try changing his milk to nutrini energy which is 1.5cals per ml, hoping that what he can keep down will at least have more calories in it, although this might not work as it has milk protien in it so that just might make him sicker!

getting a bit fed up with all this now!

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TotalChaos · 09/01/2009 18:52

oh blimey so that was conclusive NOT. sorry you're still being left in suspense by the pros.

sarah293 · 09/01/2009 18:53

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glitteryb6 · 09/01/2009 19:15

we're doing gravity bolus feeds, 3 or 4 a day, they did suggest continuous pump feeding so its smaller amounts as he also has motility problems but if he can whip out a button what would he be like with a length of tubing permanently attached to him?

if they did it at night they would need to tie his hands together and heavily sedate him.....altho thats not such a bad idea maybe?

do they put apple juice down the tube then?
the gastrostomy nurse told us that the juice based calorie drinks rot the tubes so i havent put anything like that down.

unfortunately there is no pattern to the puking, it can happen anytime...while hes eating orally, while hes being tube fed, hours later while sitting in his supported seat, pretty much anytime whether food is involved or not which makes me think more dystonic spasm than anything else, i suppose that could be forcing the fundo open to let the puke out but its closing back down when not in spasm therefore looks ok?

do you have a link to the blenderised group so i can have a look?

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sarah293 · 09/01/2009 19:18

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glitteryb6 · 09/01/2009 19:23

ta for the link!

well the community dietician said the balloons can deteriorate if they are lying in a pool of acid in the stomach and the surgeon told me to stop the ranitidine after the op so i think they all tell you something different!

i got a spare button yesterday and have a few coming next week so i might give the juices a go, hang the rot!

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sarah293 · 09/01/2009 19:37

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glitteryb6 · 09/01/2009 19:47

yeah supposed to change every 3 months but hes on his 3rd already in 2 months

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sarah293 · 09/01/2009 19:58

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glitteryb6 · 09/01/2009 20:01

i know £144 a time

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sarah293 · 09/01/2009 20:03

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glitteryb6 · 09/01/2009 20:07

yeah thinking about sticking the two spare 14fr's on ebay seeing as they wont fit now, i also have 83 cartons of nutrini pepti in the cupboard

£2000 mmmmmm!

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glitteryb6 · 09/01/2009 20:10

perhaps we should just point out we are only joking, not sure everyone shares our sense of humour!

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