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

gosh
]

Hi everyone, I don't post often, but have a ds with a PEG and various ailments but all ok right now, ish . I wanted to post for you, ISITME1, as I just wanted to say I am sorry your ds is in hospital, it is so like what my ds presents with. Temp, everything clear but spiking, nothing to pin anything onto but a very poorly child in general. Re the head symptoms, my friends baby had this and had a v small operation to adjust some of the skull to allow the brain to grow and develop. All is well and she is now whizzing about at nearly 2 years of age.
Sounds like peg may need changing also?? With non specific high temps and general achiness around the area?
Just my humble opinion.
This thread is my life saver, even though I rarely post, but huge hugs to everyone (most unmumsnetty) and here's hoping we have an infection free Yuletide!

Aww thanks dontlaugh
Hes just had another cannula put in :( this time hand which I did say i preferred feet as he can't pull at it.
I turned around to get him clean pjs as others were full of blood and he had the other hand tugging at the tube of the cannula.
Will ring the other dr to see what he recommends with changing it

PS your more than welcome here anytime

Pps or is it pss? I wonder how many more lurkers we have?
X

:(
Official report not in but there is a problem and he needs follow up.

Lots of lurkers, I am sure!
DS had a central line in but that was removed recently, it is easier not having cannulas.
Can it be covered with large fabric bandage to stop him pulling? May work.
Hope follow up ok, nothing worse than no diagnosis.

They said he needs follow up :(

We are home.
Just want all ds2 tests over and done with so we know what we're dealing with.

Hes not been too bad bronchiolitis wise so far thankfully
Wonder where everyone has gone?
With regards to ds1 inwas telling one of the nurses and she said it sounds like crohns but as they only did half colonoscopy the results areny reliable and yet the consultant is thinking they arem she said nhs are shit for diagnosing stuff like that and its better to go private. She also has bowel condition and therefore has kinda been there done that.
How is everyone x

Hello, dontlaugh. Anyone can post here, we're not fussy ( bunch of scruffs ).

Don't know what to say isitme . Can't believe you are having so much stress and worry over the new baby. He's supposed to be the easy one, and now all this crap! You must be so stressed. Let's hope it's just a a bone thing on his skull and not one of the genetic things. They scare the life out of me.

El and al are a bit on the snotty side (as usual this time of year). El weighs a ton and we are really having to start working on him doing more. Blended diet is fabulous, but we never thought about the affect on everyone's backs! His hips, spine, etc are all ok. His teeth (all 4) are ok. New AFOs fit nicely. Button looking nice. Let's hope the appointments fizzle out now. Xxx

Cross posted! TooOld said crohns too!

Aww. Bless.
It sounds like hea doing great on bd.

Ds2 is on my lap and hes learnt how to take his dummy out and hes almost putting it back in!
Cant help but worry thats what mums do best.

if its something that needs operating on that scares me. I suppose im glad that hes been ill and in hospital because we've been able to do something about it.

Someone asked me about his feet. Never noticed but they dip in where the little toe is and just before the toes start is also a lil odd.

Arrghh

Must stop.
X

Sorry not posted for a week, think a PND flare up, house is a mess and I can't stop eating and worrying.
I hate the dark times.
Crohns sounds like a reasonable diagnosis for ds1 maybe now they can start looking at some real treatment for him now.
Hope ds2 head is ok, have they said what is causing it? Like mum says he should be the one you don't have to worry about!

Giddy im also guilty of over eating while lting mess pile up when it gets dark quick. Makes you feel under the weather and what notm

Ds1 gastro wont take him seriously. Still haven't got round to ringing the other.
Will do on Monday.

Ds2 is also a wprry buuut ots jist tough. In hosp there was a woman who had 2 lods woth 'half a heart' they jad ops to correct them. The youngest is onlu 4. He also has a leak around the heart so when I get :( I still thibk well thank God its hopefully nothing as bad as that.

Sorry about typos phone os playing up amd wont let me see the post

I shouldn't feel like this, I have 2 healthy babes just feel so shit and pathetic everything is left to me, dh likes to think he helps but he doesn't he just swans off out when he feels like it, and buys shit!
Sorry pity party over here

Men.
Ds2 was crying last night and wouldn't shut up.
I was getting rather upsetpissed off so I said here go to daddy. He said why coz daddy is relaxing?

Thought f.it will do it myself like I have always done.

Back then I had dm support but not anymore.

Giddy
Its fuckin hard having 1 with SN and 1 'normal'ds1 issues are 90% gastric it must be harder with el and al.

I really do understand. When you feel you need to vent im here.

&

Hi all, so sorry I have neglected you but am snowed under.

DGGS what a time you are having sorry things have gone tits up for you lately, it really isn't fair. Have they given any idea on their thoughts about baby's head? Must agree about bowels what are they playing at? It's children's lives.

Giddy what are you like whinge away all you like we are all in this together but it is my turn next.

Life busy here have had 5 bloody appointments this week in the city 50 mile round trip. Ben's VNS for his epilepsy is yet to kick in, Like DGGS we are going down the crohns avenue again.

Dinner is cooked tongues are hanging out!!
Love to all
XXX

we've just had a run of appointments too think they are over now for a few weeks at least.
I feel really sick today stomach cramping and everything wonder if I've eaten something odd?
2old you're welcome to the next pity party I hate feeling down.

Just want the black cloud to shift.

how are the boys today?

I looked at ds last night and it was just so obvious about his head. Really made me feel crap. Its his eyes though too. They seem really in kinda thing.

Like I said hes still my baby but its a cruel world out there.

Ds1 isn't too bad hes been eating lots of maderia birthday cake! Very happy with that. He said to me tge other night mama you are naughty boy because I told him to go sleep
He also wants to fly like a bird
Something to cheer us all up lol.
Granny hope the appointments calm down a lil.
Would love it if they sent his appointment soon so we know what we are dealing with.

X
How are the boys?
Do you feel better today giddy? The sun is shining here which helps my mood x

bet ive jinxed it, probably snow later now

What did I say.
Its gone all dark now

Still feeling crap, but I've made a decision. I can't deal with the anxiety anymore, so think its time to do something about it.
Alex sees the health visitor next week and I will have a chat to them too.

He will always be your baby, I think that's what a lot of people don't understand love to all, and hope for a quiet night x

DGG try not to worry too much---far easier said than done but they are your beautiful boys first and foremost. DGGS sounds a dream this may sound self indulgent I really wish my 2 could speak . XXX

Giddy so sorry you are still feeling like rubbish like you I have felt sick with anxiety 1st time in my life!! I am due to see GP Monday he insisted on blood test but I know it is anxiety but at least he listened.

love to all xxx
PS is Oldsneeze OK

Hi I'm ok . Trying not to catch the anxiety bug from jess! Crushed by the defeat of England cricketers. . Nothing cheers me up like kicking the smug, superior grins off the Aussie faces!

Hugs to all having all these trials and tribulations. Anxiety is crippling . It's crap I know. Xxxxxxxx

Hi like you I am absolutely gutted over the cricket, smug pigs!! And then the rugby And Norwich lost!!!

Glad you are OK hugs to you lot keep smiling XXXX

I think jess is rather stro for talking about jer anxiety to hv.
I dont have the balls to do so
I dont want antidepressants again.
They made me feel so horrible and numb

Atm ive got both boys laughing at me as ive got the hiccups

Granny they both are amazing.
I was watching the Simpsons last night (comedies help) and one of the characters shouted 'I love boobies'.
Ds them repeated mama I love boobies I love boobies boobies lmao

I have bad panic attacks thinking im going to die and leave 2 boys who need me behind then I try and calm myself down by reminding myself of what I've been through and that im stronger than that

Were a soft bunch really lol.
I really think we should all move to a nice warm countryqwhere it doesn't go dark at3pm and we will all feel better
[sunshine] is all we need

isitme, I thought it was just me who had the irrational i'm going to die of something and leave my 2 behind where they wont be looked after properly. I think that is where my whole anxieties stem from, you know I think you and me are 'normal' lol

im all for moving somewhere nice in the winter, maybe new Zealand, then back again for the 'summer' here, if I had the money to spend that's what id do!

El keeps signing 'toilet' but when we stick him on he wants to come off, I think its because he wants to read a book, which is his reward for doing something on the loo, don't think hes quite realised that he doesn't get a book for not doing anything, so it toilet, toilet, toilet!!!

I may be coming out of the rain cloud here, and everytime I do I think that that will be the last time, it never is. I will get it sorted x