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

X

5 days to go it's not sunk in yet that in a few days we're going to have another baby!

DS threw up on my nice clean bedding and pillows this morning, I wonder why he is more sicky in the morning?
Peg site looking better, but the anti biotic runs still persisting.

isit must second what 2old says about kidneys, but glad your DS is getting better.
Hope everyone is well, the sun is shining here, looks lovely out side, but I bet it's still freezing!

I had some pain last night but was fine after paracetamol. Should get a phone call in thr next few days or so about what to do next.
Giddy im really excited for you!!
Hmm I wonder whats making him sick in the morning.

Glad his site is better.

Thank you for that Im doing my best to look after them.
Ds had headache yesterday that wouldn't shift after paracetamol. So I rang pharmacy and asked if he could have nurofen and they said yes but not a lot and if hes no better in 3 hours take him hosp. His temp wouldn't come down either but thankfully it worked and I will mention to his gastric today.
He better pull his finger out of his arse and do something this time.
X

Hi all
Grandaughter hope you feeling OK and get some answers soon. How is DGGS hope his appt with gastro.

Giddy please make sure you post daily if you don't I will think something has happened Hope Elliott has stopped upchucking.

As I said previously I ordered 7 buddybuttons cost over £30 yesterday card dropped through letterbox saying I owe the PO £13.77 bloody handling charge Will try and make them myself!!! Nearly £50

Think they came from America then The £13.77 is probably from customs? I got a refund from the border agency on a giant bumbo for elbear. Bit of a faff but it was a lot more! You can if its for special needs and gastrostomy buttons are definitely that! silly girl, i know where you can get british ones, or i would have made them. I will anyway if you need more and if they are substandard not as pretty you can buy them in UK!! Please please tell me before you spend more money

Your poor little DS isitme. I hope someone gets to the bottom of all his problems, seems so excessive for such a little one. Els is snotty now but he's at nursery so its normal. The puking long gone, except the usual snotty puke whenever he's been swallowing snot all night

5 days to go and fingernails are gone. Starting on toenails now. There WILL be pics

Oh and quite a lot of pooing from the antibiotics. Nursie said kids often get site infections with colds and bugs as they are always putting their hands in mucky places not the most hygiene conscious folk

Good morning all, still all present and correct although stitch type pain where he is sticking his bum out! And DS insisting on waking up at 4:50.

£50 !!! Hope they are worth it!

Did the gastro doc manage to cast any light on DSs problems?

It's snowing here but not massively bad, the roads are clear at least DS going to nursery dispite what he says puked again this morning just after he had the snottiness greenly sneeze possible

Hope all is well on this Freezing Friday.

Went to Nottingham yesterday (8 hr round trip) for SDR/baclofen pump consultation for DS . Was expecting several trips for assessment, was due for physio's opinion but to my surprise saw the Neurosurgeon who felt SDR was best option due to jej tube and cochlear implant being a source of infection. Then said he will put him on the list (?July) for surgery. I was staggered and we were out in 1/2 hr.

Giddy am hovering over computer for news

XXDGD and DGGS

Oldsneeze I am a lazy sod so I will just pay up for buddybuttons.

LO's in respite this w/e so I may just hibernate under a blanket!!

2old. fabulous news about SDR. I am totally in agreement. Its a big op but when its done its done. Baclofen pumps can be scary things and its an ongoing care and maintenance, not to mention a big pump stuck in the abdomen (cannot be comfortable). Is DS able to walk at all, even in a walker? Even if its just for comfort so so much nicer than baclofen, especially with seizure disorders. (or is it the wrong DS?)

There a big childrens centre in Nottingham doing heart surgery too. I think they are pretty good as they want to move the yorks heart surg over there.

4 days to go. feeling sick and needing chocolate and gin and tonic!

Hi oldsneeze a big thankyou for your support,
Sadly DS can do nothing unable to sit unsupported going in a stander is hard work for him as his feet splay out at right angles.
I feel very envious of people talking about walking and sitting stupid bloody selfish birth mother
But am delighted about yesterday.Re hearts my 2 girls were under GOSH who gave them a life
Waiting for news your end!!
Love to all XX

Still all intact here, however heavy snowfall will make it difficult to get anywhere today so lets hope everything stays put over the weekend!

Ds can't sit unaided either, so frustrating and annoying at times as I bet he could if he concentrated and stopped throwing his head around.
Still full of snot which made him vomit at 4:30 am then just as the bed was changed his nappy leaked!

Hoping for an un eventful day xx

Still no baby
DS being a bugger head, woke up again. At 4:30 (I can see a pattern here) I just pretended to be asleep until he started beeping my nose with his thumb! Had to laugh he eventually went back to sleep

Been persuaded into seeing the in-laws with a quick shopping trip, I'd rather lounge in bed all day lol
Oh well best get up and showered!
Hope all is well x

Sorry granny no advice here on hearts.

Giddy bet your excited and nervous! You too sneeze.

Ive been ill here with kidneys but trying to flush it out rather than running to the hospital. Also been very constipated due to iron meds. Took some lactulose and now I can't get off the loo!
Ds has been given more meds and wait for constipation to sort out then see what reflux is like. Atm hes doing well with eating.

Feel pretty shit due to this whole kidney thingm dh is worried too.
X
Hope everyone is well x

Will you stop messing about! Or else I shall be round with OBE For you young ones:=
Caster Oil, hot Bath and Enema (high hot and hell of a lot ) What an evil sod I am!
Well done DS
Hope you spent loads of money.
XX DGD and DGGS

Grand total of £8 spent DH a skin flint

High hot and a hell of a lot LOL spoken like a proper nurse cruel to be kind. And I'd like to add at this time that my bowels are very regular! (Anxiety induced IBS)

Hope DS is ok isitme xx

Survived the weekend!
DH getting a bit nervous now, started cleaning the house, including the windows lol.

I am on an enforced day off work. Bloomin dead battery in the car. Have called the RAC but as I am at home I am not a priority (lots of people stuck in the snowdrifts) so the eta is up to 1pm - I only work until 2!!

Then I may have to go on a drive to get it charged or get to a garage for a new battery or both!!
Grr

Starmummy. The cold weather sorts the good batteries from the rubbish ones for sure. . It is brass monkeys out there, would not fancy fiddling with a car!

B day tomorrow. All plans in place. Wait and see now.

Hope you all keep well xxx

What your birthday your 21st no what a silly old fool I am. Will be here waiting champagne on ice.
Not a good day here.
DGS where are you? Not nagging.
Star stay indoors if I was you
XXX

Ok here I go

Not that birthday but THAT birth day

He has arrived safe and well. Jess and babe both ok. Not seen them yet. Ell keeps denying he has a baby brother. Going to be interesting here for a while. Will see some pics soon. Very very relieved

Oooh off to see him. Will do pics for you.

congratulations to you all
So pleased for you
Love to you all X
OF and I will wet babe's head

Sack everything else.

Firstly congratulations! !! Thatd brilliant.

Hope the both of them are doing well.

On a different note ds is in hospital.

Hes blocked up.
Had xray which confirms theres some blockage. Hes on a clean n prep thing atm to get him moving. If this doesnt work then manual evacuation? Or something of the sort.
The wanted to send me home on movico I said no its shit. He needs sorting now.

Sneeze let us know how they are and send them our love

X

Hello everyone had baby giddy yesterday at 11:35, weighs 6.11 oz, still a little tiddler, but bigger than ds1. He kept me up all night with constant feeding and is quite settled and asleep now. Still trying to figure out a name.

He wee'd on the midwife last night, biggest wee ever! I'm in quite a bit of pain lower abdo, but to be expected, finding it difficult to stand and walk.
Everything has sagged now that baby has come out, hope it pings back but probably not ah well

Hope your DS gets un bunged soon, must be so. Uncomfortable for him bless x
Have a glass or 2 for me 2old

Bless him. Well done! Still a nice size.
Lil sis had baby other day too. Hers wws 6.2lb. Smallest outta our family.

Ds has been quite confusing. Drs are baffled at how well he looks and is in himself but its just his nature. Wouldnt recommend this ward to anyone.

They are absolute bastards. They didn't show me around so didn't even know where loo was or nurses desk or parents room (didnt know we had 1 until I was telling mum they dont and another parent told me where it was) didnt tell me where pantry was or linen cupboard.

Ds had klean n prep which left him with lots of overflow. He was covered in it fr toes to chest and they didnt wake me. Instead they put his blanket over it and left him without blanket and It was cold here. They didn't even wake me or attempt to clean him.
I got his milk this morning at 11.30!!! The feed that was supposed to be on between8-9am. And they've not sent enough feed.
Nurse keeps trying to discharge him but dr doesn't agree thankfully. Theu just want to shove everyone out.
On day 1 ds had no breakfast as they dont even offer toast!

Rant nearly over lol. .
How is everyone? X