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Glitteryboy home safe and well!

32 replies

glitteryb6 · 08/11/2008 20:51

All went really well and we got out this morning!

Operation was on Wednesday afternoon at 2.30pm, took a wee bit longer than they thought it might as they were trying to get the fundo just right for him, i was called down to recovery at 5.30pm as he was "distressed" and they were a bit worried about him.

I went down, had a look and told them he was just being his usual drama queen self and was really annoyed cos he was lying on his back which he hates!

Took back up to the ward on morphine, fluid drip and a bit of O2 and pretty much whimpered and moaned till 3 in the morning when i decided i was going to flip him onto his tummy, thought it might be painful lying on it but he was snoring within 5 minutes!!

Thursday he had his meds thru the tube and dioralyte then later started having milk thru it and they showed me how to do it myself.

Friday he started having all his meals orally again while ramping up the milk thru the tube, docs came round that night and asked how he was and how i was coping etc and said they would see me in the morning.

Came round this morning and said we could go home but we would need to go back up the hospital on Monday to get his stitches out and they will show me how to change the water in the balloon.

Quite suprised we got home so early as we had been told by the nurses on the ward its usually 5-7 days for a button and fundo and we were only there three and a bit, but i had told the docs i didnt fancy staying too long and ds was getting a bit fed up just watching dvds and getting woke up by machine beeps and screaming babies!

Anyway ds now snoring happily in his own bed and im putting my feet up, hopefully all will continue to go well and he'll soon be a fat wee git

OP posts:
glitteryb6 · 08/11/2008 20:53

Ive stuck up another few pics too!

OP posts:
feelingbitbetter · 08/11/2008 20:53

Wonderful news Glittery

bullet123 · 08/11/2008 20:56

Glad he's home now .

feelingbitbetter · 08/11/2008 20:57

Looking Good Glitteryboy! xx

BriocheDoree · 09/11/2008 06:57

GrinSmileGrin

trace2 · 09/11/2008 08:49

found you lol! so glad all went well he sounds likea little trooper and iv just looked at his pics they done a great job chloes still uck and hes sooo handsome. how much feed his he on now? are you releasing gas? and changing the ballon is easy once you shown

trace2 · 09/11/2008 08:50

changing the water i mean

Tclanger · 09/11/2008 10:02

This reply has been deleted

Message withdrawn at poster's request.

glitteryb6 · 09/11/2008 10:10

hi trace, just taking the feed slowly just now, hes on nutrini pepti and they would like him up to 750-1000mls a day as its only one cal per ml, but we're aiming for 500mls to begin with.

He hasnt really had any gas as despite the fundo he is still able to burp which apparently some of them can.

Hes just on a soft food diet for a week or so, yoghurts, mash etc...last night i pureed a chicken curry for him and it went down a treat

im finding that if i tube feed him then try to feed him his dinner hes not as hungry so i will be feeding him orally first then topping him up with the tube feeds.

he isnt drinking as much orally but i guess he probably isnt as thirsty as hes well hydrated thru the tube.

the tubes fabulous for his medicines, they go down so easily, but the wee bugger has found out that he can make the milk in the syringe go back up if he tenses his stomach, thinks its a good game

OP posts:
melmamof3 · 09/11/2008 10:15

This reply has been deleted

Message withdrawn at poster's request.

theheadgirl · 09/11/2008 16:42

Excellent news - here's to him chubbing up for you

needmorecoffee · 09/11/2008 16:48

are you just going to be supplememtning him?

glitteryb6 · 09/11/2008 21:43

nmc, at first till hes put on enough weight he will get quite a lot thru his tube but as he can eat orally the hope is that once he has gained enough weight we can cut it back a bit to just top ups if hes ill or hasnt eaten enough that day, hes still eating 3 meals a day as usual albeit not as much quantity at the moment but so far he has gained half a kilo just since wednesday.

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needmorecoffee · 10/11/2008 07:59

dd's doc wants to keep her at 70% of 'average' weight cos of all the lifting and pressure sore uissues.
Is that usual?

glitteryb6 · 10/11/2008 09:17

to start with they will be happy if ds follows the centile line he was on a few years back, albeit a low one, as long as he doesnt drop off like he has been doing, think its about the 5th centile on the normal chart.

are they meaning average weight on the normal centile chart or the CP one as there is a big difference?

heres the link to the CP ones

www.kennedykrieger.org/kki_misc.jsp?pid=2694

OP posts:
needmorecoffee · 10/11/2008 09:18

ooo, not seen thouse. I think he said he wanted her on the 25% centile. She's currently off the bottom of the charts.

needmorecoffee · 10/11/2008 09:20

those are height charts, not weight.

glitteryb6 · 10/11/2008 10:15

scroll down there are 4 pages

1st page is height/age
2nd page is weight/height
3rd page is weight/age
4th page is notes

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glitteryb6 · 10/11/2008 10:25

when ds was 2 he was about the 70th centile on the cp chart but only the 10th centile on the normal one

now he is about the 30th centile on the cp chart, he is still 3kg off the 10th centile on the normal chart

if you look up until the age of 10, the 90th cp centile is just above the 10th normal one so i guess our kids will never be too chubby!

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needmorecoffee · 10/11/2008 10:34

well well well, that has her just below the 50th centile. She's 4.8 and 12 kg's.
Maybe she doesn't need a tube after all?
I'll print that out.

glitteryb6 · 10/11/2008 10:47

my health visitor and dietician had never seen it before but the community paed had, they could argue that its based on american children but im sure i read somewhere that the normal ones were based on american research too

ds is 4.6 and around 11kgs

yeah quote the site...

"For those children with quadriplegia, ideal body weight should accommodate the principles of assuring good health by maintaining adequate fat and muscle stores and allow for ease in daily physical care and management"

its all very well them being on the 50th normal centile but its us who have to lift them

at age 5 the 50th centile normal is 18.5kg but 50th centile cp is only 13kg, big difference!

OP posts:
glitteryb6 · 10/11/2008 10:51

of course im talking boy weights

for girls at age 5 its 17.5kg and 12.5kgs respectively

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needmorecoffee · 10/11/2008 12:37

according to those charts dd is spot on for weight. BUT, are these quadraplegics who are healthy or ones who need a tube? Its not clear where they got their data from and how scientific it is.
Its is ok for dd to be off the non-disabled charts if she on the CP chart?

nuru · 10/11/2008 13:44

not CP related, but dd2 has Down's and we have specific growth charts for children with DS. Our paed and HV only ever use those, and to be honest I wouldn't know where she is on the regular charts. Children with DS have a very different rate and style of growth, so by using the condition-specific charts, you are comparing like with like.
She had FTT when little, so if we'd looked at her on the regular charts, I think she would have been fed non-orally. Because we used the Down's charts, altho she was right on the bottom of them, at least we had a hope of convincing folks she would get there in the end!
Would make sense to me that the same would hold true for children with CP in terms of their physical growth.
Good luck!

needmorecoffee · 10/11/2008 20:04

dh says we should refuse the g-tube as she is just fine on the CP charts. And to be honest, while she is thin she's not just skin and bones, she has energy - its not like she uses too much cos she doesn't run around etc.
We'd be risking infection, reflux and other complications to fit her on a non-CP chart.
Now I don't know what to do!