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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Granny we've had beautiful weather here :)

Sneeze its hard to trust anyone else with those whom you know need the extra care. I still can't imagine ds with dh for a day and him managing ds milk feeds plus water feeds and meds he can't change nappies either lol the last time he put it on back to front but we cant do everything all the time and sometimes it takes a fresh face to help.

Giddy how are the boys x

I got babys
-car seat

• cot
• wardrobe
• spare room cleaned

Have been very crampy past few days. Feel like im.on period. And tightenings are more but bearable.

oooh and like I said im sure I did that I had kidney infection and due to being on antibiotics dipstick showed nothing so urine was sent of to the labs. Well I got a letter back on Thursday and it said you haave an infection get some antibiotics from gp. Have been on antibiotics since then and not much difference. I see the consultant tomorrow so will mention plus I have a growth scan felt like shouting ha bitch I told you I had an infection (dr was trying to say it was nothing)

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I've had 2 glasses of wine as the garden is DOING MY HEAD IN! Hopefully tackling the last of it semi drunk will make it less painful...just want it finished. OF insisted on the planting, then offloaded it onto me (as usual).... Buys a crappy old bench I spent yesterday painting...tells me it looks awful so he is going to dump it I am seriously annoyed with him for swanning off and leaving me to do all the work which he will no doubt be claiming as his own....he has form!

You tell em isitme!

Not at all gastrostomy related lol

Hi Oldsneeze I know where you are coming from re wine. It is so bloody cold here 11 degrees C new plants here are still in "lean to"

Not a lot going on here except stress levels are on the up re Jay's back surgery next week. So much to organise I am starting to panic more help

DGD sorry about pee infection but once again patient knows!! How is my DGGS?

Giddy hope you and yours are OK

I send my love to you all. Thankyou all for your friendship

How can it be 11C its about 19 in the chilly north!! Plants are all in. Can't believe only a week to go for the surgery omg! No wonder you are stressed. Think about asking about for a spinal block or epidural for pain relief post OP. I read research to say it is the best for controlling pain. Know what you mean about stress and worry. It's what I really hate all the stupid anxiety. Does no good to worry but I have a degree in it! I'm sure Jay will be OK but it's a bumpy ride but will be the best thing eventually just for his comfort.

Off for a warm bath to relax after a back aching day. Take care all xxxx

Hope your not too busy running round getting stuff organised granny.

Sneeze I won't touch no gardening im a wuss and scared of creepy crawlers

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Had to go quick as ds was coughing his lungs up!
His cough seems to be getting worse at night now?
Asthma? He has inhaler from last yr still in date. It works but not for long?
Baby is measuring 37weeks at 34 weeks. Hes 2602g (5lb11) hes at high range of normal. Get seen again in 3 weeks. If the antibiotics im on don't work then in 3 days.

How is everyone?

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Dr said he has a wheeze. Hes been prescribed another inhaler. So he has the ventolin and another that begins with b.

How is everyone x

We are doing ok. Took DGS riding yesterday and he is definitely liking it more and sitting better. Helps to have a helmet that fits . Today took him for some cranio- sacral therapy. Not sure whether its a bit new agey but it won't do any harm, and he seems to like it. We're hoping it helps with his anxiety around strangers and his startle reflex which is hanging around!

Hope little DS is better on his inhalers. It's bad at this time of the year with all the pollen making things worse. I think it's jays operation this week so 2old is probably snowed under with all the organising, hopefully will take her mind off the OP itself.

Hi all
oldsneeze you have summed it up well---stress levels are rising But heyhey if I couldn't stand the heat should have stayed out of the kitchen!! I am slowly sorting things out for next week. As we have only one car that takes wheelchairs OF will need big car for Annabel and the others so I will be carless in Nottingham. Brilliant friend has offered to bring us home. Re spinal block not quite up to speed yet but will certainly give it some thought
DGD hope my little DGGS is ok Ellen has 2 inhalers Ventolin and Flixotide so good luck. Hope you wee infection is sorted out

Yes it was bloody cold here still lighting fires it is bloody june.
Hope giddy and family are OK and Alex hasn't gobbled her up
Pleased Alex enjoyed his riding it is fantasticfor children with CP.

My 2 scallywags are off to respite and Hawaiin outfits are sorted.

Sleepwell my friends XX

20ld. Try not to stress too much. Once its organised and you are there it should calm down. There is that hospital thing that takes over and you enter another world where you dont have to decide anything, just wander around looking for costa coffee

Have posted two cute pictures of the boys on my profile. They look scrumptious

Will sort buddy buttons if it continues to be cloudy and drizzly

Thanks Oldsneeze I am trying hard not to stress and agree once we are there, there is not a lot I can do except worry about OF and Annabel's colostomy.Will look on your profile
Still cold here Central Heating kicking in
hope all is well with your scallywags Jay and Annabel are in respite so hoping for interrupted sleep bar Ben having a seizure
Love to all XX

Sneeze is right. It's rhe run up that is the bit that tires you out.
Hope all goes well.

Ooo must check the new pictures out :)

Ds has been a lot better since having the steriod inhaler. He does still sound chesty but not as bad as before.
He came up to bump last night and said c'mon baby lets go ufo (ufo is his word for sleep not tje aliens lol) and rhen hr tried pushing baby down and pulling on my skin. He said mama baby stuck. Lmao. It was so cute. While pushing baby down he was making the grunting noises lol.

How is everyone? How are the boys?
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Absolutely adorable! ! Look at els curls! Wow.
And that smile! Baby alex is coming on nicely!

Well done to giddy (and sneeze)
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Hi sorry I've not been around lately, I've been encouraging my anxieties and worked myself into a frenzy, I think it has peaked now and hopefully it doesn't return (they're in a box in the sea- imagery helps lol)

2old thinking of you and jay x
Isitme very cute about DS I must say that Elliot is really accepting of Alex, and has an instant stop crying effect on him lol x
Love to all xx

Isitme1 and anyone else who has reflux child. There's a support group on Facebook called 'Living with Reflux - UK's National Charity'

I haven't read whole thread, so apologies if you know about this or thread has moved on, but it's a great group. I have one mild refluxer and one more severe DC.

Also if you have UTIs you should drink lots of cranberry juice. Better than tablets apparently. Read that somewhere yesterday!

Hi all
Oldsneeze and Giddy, I have approached SS and told them I would be very happy to adopt Elliot and Alex they are scrummy Did not realise you are Yorkshire based OF is a Scarboroughian

DGD hope you are well, not long now How is DGGS I will adopt him too I should be so lucky!!

Am trying not to get too stressed re SDR there is so much to arrange, however have managed to sort out Annabel for 3 nights (thanks NHS) so OF will just have the biggies to deal with.

I hope all you scallywags sleep well!!
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Thanks trackies. Will check it out.

Sneeze ive tried that but didn't work. I have a leaking valve into my kidney which causes the infections (as far as I remember, it was discovered when I was younger)

3 nights is better than nothing granny and im sure he will manage (no other choice really lol)
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Ds sang happy birthday to bump yesterday lol x

Hi,
Hope you don't mind me posting here - could I ask about what to do with unused feed? (Pediasure Plus) My DS who has autism stopped eating after a stomach bug. He was pump fed via an NG tube for 2 weeks but has now started to eat again. We have 3 months supply just delivered of giving sets, syringes etc which I imagine I can return but what do I do with the feed? Any ideas gratefully received, such a waste to throw it out!
TIA (just putting him to bed, will see any replies later)

Hi frazzled1 this has happened to us, as you say they will not accept food back (infuriates me when a bag of food could save a child's life) Excess equipment in my experience is also refused. I have a brilliant pharmacist who can get it to the third world. This really angers me that feed companies cannot arrange this.
Glad your son is eating again

Thanks 2old, will try a local pharmacist!

Update:
Im leaking plus getting mild contractions that are getting worse.
Its not an awful lot and I hope it's not wee as I'm very excited lol.
Wow.
Shit. That hurts.

Must go walk about
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Are you term now? Oh so exciting!

Just starting the bedtime routine, god I'm shattered, I came home from dropping el off at nursery and just took Alex to bed with me, felt better for it, but still tired!
El has started with the snots, not too bad at the mo. been for a ride on Ben the pony really enjoyed himself even the OF managed to turn up for a few photos, even though he got the lip initially!

Seeing the dietitian on the 26th for an hour long appointment think the gastro nurse is going to be there also and we are going to have a chat about how to feed el when he's in school.

El is managing to say Alex (al-e) which is cute

Alex is stuck to my boob watching tv but cries if I take him off, I'm sure there is nothing left that side but hey ho

frazzled if they are sealed boxes our company will take feed back

2old how are you bearing up?

Awww bless. Its nice when they start ro say something that means so much.

Im 35+weeks. Im getting pain but dh wont let me get up to help it all along lol.
Still leaking tiny bits.

Lil bro is the same. He will suck for ages and mum is convinced that she's being sucked dry lol.

Granny how are you coping

Id be devastated if it was nothing lol. Very excited
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