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Here are some suggested organisations that offer expert advice on special needs.

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Here are some suggested organisations that offer expert advice on special needs.

SN children

lets talk about G-tubes

59 replies

needmorecoffee · 09/12/2008 17:52

dd has a PEG and the tube is at least 46 feet long. We could lassoo elephants with it. How do it keep it disceretly tugged somewhere and not dnagling loops that will catch onto everything?

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needmorecoffee · 10/12/2008 20:15

called NHS Direct plus the out of hours GP and they both said take her to A&E. But they always do when they hear the words 'cerebral palsy'.
We gave her a drop of midazolan and she has fallen asleep. If she cries when she wakes up we will take her to A&E.
I'm feeling a bit resentful cos I'm tired and want to go to bed

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twinklingtrace2 · 10/12/2008 20:31

oh dont please, yes your tired its been hard going for you ill text you tomorrow to see how she is

Jollyjoseyjinglebells · 10/12/2008 20:51

Hope you all get a good sleep and dont need to do an A&E dash.

glitteryb6 · 10/12/2008 21:00

cant remember if it was the first or second night out of hospital but ds screamed and didnt sleep pretty much the whole night, although i suspected he needed a big poo as i gave him a suppository as he hadnt went for a while and he was fine the next day, bit grumpy but other than that he was fine, paed said its because his stomach would be upset by not getting anything thru it for a few days?

needmorecoffee · 11/12/2008 11:31

she's still miserable. SWchool want me to go fetch her. Its not constipation. GP was useless. Don't know what to do
Feeding nurse coming for first visit this afternoon so hopefully she'll have some answers.

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needmorecoffee · 11/12/2008 13:35

she is still yelling. Nurse will be here at 3.30 and says of course its sore even if surgeon said it wasn't and that she'd be able to tell if it was infected inside or wrong. I want the farking thing gone

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twinklingtrace2 · 11/12/2008 16:21

nmc how is she what the nurse said?

needmorecoffee · 11/12/2008 16:56

still yelling. Nurse said her site was fine and not infected but that it will be sore and cos dd is one of those over-sensitive sorts, she will give us a bad couple of weeks
She shortenend the tube for us, down to 8 inches which is much more maneagble.
I'm feeling very weepy and very tired cos I hate dd crying and being in pain and we're all stressed cos of the screaming

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twinklingtrace2 · 11/12/2008 17:05

((hugs)) wish i could help is there anyone to give you a rest? or even a good friend to a coffee and chat too. so wish i lived nearer to come round

needmorecoffee · 11/12/2008 17:07

we'll have a respite carer tomorrow afty and I'm afarid I will sedate her for sleep tonight.
Right now I'm wishing we hadn't done it

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twinklingtrace2 · 11/12/2008 17:11

at least youll get a little rest, even though youll be worring while shes away.

me to wishing i hadnt said yes to having dd done and i told surgen on tuseday, he said togive it a little time

needmorecoffee · 11/12/2008 17:21

thats what the nurse said to me. Give it time.
The respite carer will come here.

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bullet123 · 11/12/2008 17:53

I hope she's feeling better soon. Is it her skin around the tube that's sore or is her stomach sore?

Jollyjoseyjinglebells · 11/12/2008 18:49

Oh I feel for you, I hope it settles and you wont regret having it done.

Im absolutly crapping it now for next week(sorry that sounds selfish of me) worried I should change my mind if its that awful???

Spoke to a couple of HP's here and they said they start feeding in RACH 6hours after the op as long as a reaction doesnt take place. Also as long as we are happy with what to do and there are no probs they do expect her out late on the Fri....Im going to just aim for the monday now though after everything you have all said.

needmorecoffee · 11/12/2008 19:06

why is your LO having it Josey? Like poeple said to me, I'm sure it wouldn't have been suggested if not necassary.
I think having the gastro nurse tell me its an op, its painful cos there is a hole and healing takes time helped.

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TotalChaos · 11/12/2008 19:09

hope DD feels less sore and screams less very soon. Can you give her any more pain relief to make her more comfortable?

needmorecoffee · 11/12/2008 19:17

she's had nurofen and calpol. Gonna sedate her about 9 and take her to bed.
Had to tell MIL rather forcibly to please not visit this weekend. Can't cope with visitors who want to be entertained and fed while we are going through this. She went off in a snooty huff.
Wish I drank.

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TotalChaos · 11/12/2008 19:19

sorry I realised that was a stupid question to ask as soon as I posted. Since you don't drink, do you have any decent chocolate or cake in?

needmorecoffee · 11/12/2008 19:21

no
I did go to Sainsbo's earlier and came over all healthy diet like. And didn't buy any. How stupid is that!

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Jollyjoseyjinglebells · 11/12/2008 19:43

She currently has a nasal gastric tube, was told she would never feed orally, she can though and has started solids, she just does suck so cant take a bottle. Drinks from a tommytippee just not enough. The NGT is likely making it harder for her to swallow etc so will get on better in the end. Plus her face is starting to get very sore and if she is sick the tube flies out and I have to keep changing it.

Her SALT's son has had an NGT and PEG, she thinks she will find the PEG much better.

Im just terrified now as they have all been telling me how simple it is blah blah.

Grr at your MIL mine is a serious pain in my rear!!!

Sending you some chocolate fudge yule log my friend brought me today x

Jollyjoseyjinglebells · 11/12/2008 19:43

sorry doesnt suck

needmorecoffee · 11/12/2008 19:46

ooo yum. Thanks.
It is simple in one respect but its still an op. And ops leave you sore. And little children scream. Specially mine.
Hate having to sedate her cos the benzo's are addictive. dd's paed went nuts when I told him!

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needmorecoffee · 11/12/2008 19:47

so haven't bothered telling him about our latest use of it

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Jollyjoseyjinglebells · 11/12/2008 19:53

I suppose it cant be worse than getting admitted to hozzie for vomiting blood cause your NGT has torn the lining in your nose(didnt know it was the nose as it was so high up)

She is usually quite hardy and doesnt cry alot only when really botherd by something, which hey ho an op is very likely.

I dont have anything I could sedate her with,i must ask lol I bet her pead would use it and risk the addiction if he were in your shoes, I think somethings you have to go with what is best for both of you. You are hardly going to have her shooting up

Good luck for tonight thinking of you x

Jollyjoseyjinglebells · 12/12/2008 13:54

Nearly ended up in Hospital again last night as DDs tummy was full of blood when I tested her tube

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