Gastrostomy support thread no.2! Tubefed children support thread

[Isitme1]

Welcome to thread no.2!!!

Everyone sign in please so we all know who is here

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Had to finish the post pretty quick as ds was playing up (he wanted the phone lol)
In himself hes ok until he needs a poo. He strains that bad his eyes roll back and looks like hes going to pass out! Scared myle yesterday and he didnt do it again (hes not tried since yesterday) going to ring gastrics now and see what the b* say.
Will get him checked after ive had my appointment x
How is everyone?

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If the enema doesnt work would they have to operate?
Ive rang the gastrics receptionist and will ring back again at 12 to see what they say as ive got to set off at 1.30 for my scan and consultant appointment.

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I've never seen it go past the enema stage as thats always worked so not really sure, Sorry.

Thanks sneeze. I can understand their take on it but they need to understand its stool from 8 weeks ago. What are they waiting for? An infection?

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How are the boys? And jess?x
And you :)

Well they admitting ds tomorrow. So I have time to ponder over what they said about me today.

Ive got high albumin levels which from what ive read is to do with liver and ita about protein and can indicate kidney disease. Not sure what to think really.
Im sure one of you smart arses will let me know :)
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Oh and cortical thinning of right kidney plus a 'prominent column if Bertin at mid aspect of kidney (normal varient), however a partial duplex collecting system can not br excluded.'
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DGD what a rough time you are having.
Poor little DGGS am so glad they are admitting him tomorrow NOW perhaps they will do something!!
As for you I haven't a clue Can see from what you say your kidneys are not great but can't remember the liver connection. What is your B/P doing?
Good luck!! XXXX
How are the rest of you.Hope all is well.
Life OK here, have got over last weeks hissy fit. Can't see the little buggers ever letting me get away for a few days.
Got a pair of Piedro Boots for £15!!
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ditto here apart from poorly functioning kidneys. Glad to little DS will get sorted soon, its been going on forever.

20ld. Maybe a weekend away soon? Fingers x. Piedro boots El gets those from Physio but 'Special Needs Equipment' facebook page are good for shoes and just about everything really cheaply.

www.cedars-sinai.edu/Patients/Health-Conditions/Preeclampsia-and-Eclampsia.aspx

Bp has been raised a few times but apparently it was 110/60 or something mine has always been spot on.

Yup making sure they do something before im put on bed rest lol.

Granny hope it calms down so you can at least have a soak in the bath lol.

Sneeze they said kidney function was fine
How are the boys?
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Isitme: nothing to add except hugs. Hope ds is sorted tomorrow and whatever is happening with your kidneys can be sorted without you having to take to your bed xxxx

I hope so too. Thanks.
Aibu to say that hes booked as an inpatient sort him out? Quite scared as im on my own as dh can come after 6 once hes finished work as theres a shortage of staff where he works.
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On my way there x

Hope little isitme is getting sorted as we speak and no messing around!

Does anyone know if PEG tubes, the dangly ones, get more soreness around the site when they've been in over a year. Poor DGSs looked very sore again today. Buddy buttons not been used regularly as all is new baby upheaval. Because he gets picked up round his chest/waist means it can tug a lot although it is anchored with tape.

The plan is chlomemphenicol mixed with deximethosone cream tonight and hope it settles. We want a mini button done before school in September. Is this another OP and is it better than the tube?

I was told they shouldn't be in longer than 6 months?
Buttons for me meant more hassle lol but for some are better than pegs.

Ds has peg but im sure hes got irritation on the inside.

We waited an hour to see his gastric and he sent ds for xray. I remember seeing the last one and it seems a tiny bit more than that. On both sides theres mass. Will see what he says tomorrow morning. Hes being admitted x

DGD so glad they are trying to sort DGGS out...hang on in there I know how hard it is (sad) Please take care of yourself and your LO and keep us updated.

Oldsneeze re PEGS Personally I prefer them to Mickeys. Stefen's burst so many times. I was told PEGS could stay in for 2 years + but if they needed an anaesthetic it would be wise to use the opportunity to change it.
Annabel's PEG gets very grotty but is better with Buddy Buttons but I also use Chloramphenicol and it does work
Hope Jess and boys are doing OK

XX to all

Pretty sure they said 18 months...so looks like it will be an anaesthetic then. poor baby, so sick of him being mauled about. Bit like little isitme, I'm sure it can't be good psychologically for them.

Read on BD site about chlomemphenicol I think, sound better that antibiotics systemically so hope it works. It's OTC so not prescribed but heyho we are sensible.

Will try to put pics of boys on my photos.

Forget that can't do it on flaming ipad!

Lol I find it rather that we've been told conflicting advice about how long they can stay in for.
Ds is fast asleep. Waiting for milk feed to finish so I can start up hos water. Good thing ive bought my own stuff in as they are quite bitchy about providing. She says they're busy which yes I can understand but im not having ds waiting hours for sterile water.
The other nurses were nice but the night staff aren't.

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They only thing ive used on peg site is orabase for a leaky site so not much help sorry.
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I want to scream! They've sent him home even though I argued with them. They said give him extra 100mls of water and in a few dayw he should poo or if he becomes impacted more bring him back or wait 2weeks.
The xray is exactly the same as last month. It cant be good
At a total loss of what to do!
Just want to sit in a corner and cry.
I cant stand to know my baby is ill and the drs dont care.
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:(

Total loss here too! Have they given you movicol or something? Do you have a continence nurse or someone who deals with poo related issues in children? Did they explain why they are sending him home? Seems like a complete balls up. Hope you changed to a more helpful GP. Should take a man with you, they dont seem so inclines to fob men off. Thats crap

Hes on the sodium picosulfate and docusate but still no luck.
He sees the other gastric on Thursday so looking forward to see what he says. I hope he does something x

Hi DGGD hope you and your LO's are not too stressed (how many weeks are you now). Have been thinking about DGGS and I really hope they sort something out soon.Please take care of yourselves.

A bit of a manic week here but since Jay has had his Amitriptyline increased he has been better if a little sleepy.
I am in shock as his date for his SDR has come through PANIC 17th June It seems a long way off but there is so much to arrange
(have already cooked a couple of meals)

Oldsneeze the buddy buttons are brilliant thankyou

Giddypants good wishes to you, Elliot, Alex and DH hope you are all well if tired
Take care sleep well all if possible
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just doing first feed and elliot is watching peppa pig! it doesnt make him as giddy as night Garden. he's still upset on a night hopefully it'll be back to normal soon
we're all ok here just so hectic DFIL is in the hospice in an attempt to control his pain and confusion, so DH is there a lot of the day he may be going home next week but needs a care package putting in

isitme and about them discharging ds before his problem is resolved but hopefully you can get some answers from Sheffield x

2old how exciting but nerve wrecking at the same time. you must have nerves of steel
ds' s peg site still a bit manky but better than it has been still dressing it with the creams then will get back to using the buddy buttons
ds2 a little chunk going to attempt putting him back to bed amazing hes the one who actually sleeps on a night

Every now and then I sterilise and rinse the buddy buttons in milton as I am a bit paranoid about wound infections. SDR in 6 or 7 weeks how brilliant and scary but nothing but a lot of dislocations to be had in hanging about so good overall. Another massive upheaval for the LOs though and tons to organise. You need a harry potter magic watch that makes you be in 6 places at one time

Dietician appt next tuesday and hoping for a big fight about blended diet. Bring it on!

Dread to think what will happen to little isitme DS if something doesn't get sorted!

Funny (dumbass me) story....Desperate for a new decent looking phone and not the tiny piece of crap phone I have. Got a lovely, shiny, sharp picture, good camera etc imported from china called a youpu (I should have known) really up to date except the network (2G) ...wont bore you the the technical stuff but basically wont work with my SIM. After much fiddlying I decided to return it so went to settings and reset to 'factory settings'. Problem is the factory is in china, and all the text on the phone is now chinese!!! Hope they take it back!!! I will say it arrived chinese and I am not an idiot!!!...I am an idiot!....

Granny im 7months now smug face rubs bump ds now has a sore throat and cough stills not bothering him though.

June will come quick enough, esp when you have things to organise.

Giddy ds loves peppa. Glad baby is sleeping a while during the night. Bet it helps.

Sneeze I did something like that once but remembered where language setting was and went through all of them until I found English lol

He's still not passed hard stool. I dont believe 100mls extra of water will help most of it leaks out of his peg site!
Going with mum on Thursday and she will speak up for me hopefully
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How is everyone? X

All the settings are in chinese...I mean ALL of them lol. They said I can be refunded so sending it back. Not to self....leave the setting alone!

Yay, get bossy mum to speak up for you, works for us