taadaa shiny new gastrostomy support thread no.3 tube feeding support

[isitme1]

Taaadaaaa
Welcome to the new thread! !
New and old are welcome here

Could you not ask school for a delayed start? School have said we can have a delayed start so go in late without being marked as late so he will go in 9.30-10am?

Shineyshoes can see where the CF team are coming from they have not got learning disability so need a "normal" school day. My heart goes out to you. Yes I have drugs for 3 @ 24.00 & 06.00 and I need to be up at 05.30 to get all 5 ready for 07.45 BUT I do get transport. I am lucky we are 2 OAP's so we are both at home. The thought of a CF regime x 3 would freak me!!

DGD hope you are OK and are enjoying eid love to all DGGS's XX

Sleep well you little (s)tinkers for your Mums and Dads!!XX

Sorry for being crap again, will catch up soon, just got in from work

3rd time lucky hopefully!

Hope your all ok. Darla hope youve recovered from your kidney infection.

Hope el is better too

ds has another site infection.

Think he might have cdiff again lots of smelly streaky bloody runny stool.
Will probably have to get him checked out by gastros soon.

Gastro got back to me and said 'no comment'

not sleeping very well.
Got bags that look like black eyes lol

Lost, I hope you get some rest soon and you catch a break with DS1 and he has a few weeks where is is infection free.

Lost, 2Old, Giddy and Shiney - I admire you ladies more than you can ever know. I found this site and you ladies helped me get better. I know the circumstances were different, but I just wanted to put that out there.

Lost, they found a mass on my left kidney That they think is causing all the infections. I am not having any other testing done for now as I'm dealing with DM (breast cancer) DF (lung cancer) FIL stroke, so I don't have time for me. It will all work out the way it's supposed too.
I hope you are able to get some rest. Unless teabags under the eyes are the new fashion statement for the fall.

Hope everyone is able to enjoy the rest of the summer. I'm in the states and today it's almost 100 degrees f...way too hot for me today. Until next time...

Hello all, No i have not forgotten you it is school holidays.

Hope you are all OK.

DD5 has finally got a bowel diagnosis of diversion colitis (in distal end of colostomy) now having daily rectal washouts and Mesalazine enemas, oh the joy!!

Life hectic!!

Just wanna introduce ourselves here.... DS is 6 with CP, ASD,SPD,EDS, epilepsy, arthrogryposis and he's a SWAN .... Syndrome Without A Name ... He has an undiagnosed genetic condition. Gastrostomy in since March 2014 due to severe oral aversion....
Gastrostomy was one of the most difficult decisions but one of the best as at least he is growing now!!!!

Well this week growing a Streptococcus A yummy in his button!!!! Stinking pee from antibiotics and feeling poop so needs to sit on mum.... Bah phew xxx

Babbafish welcome to you both!! Not that you wanted to be here I am sure. Like little Babbafish both mine have complex health needs one having a jej tube and the other a gastrostomy,

Am away for a few days so will speak soon, but we are all here to support!

How was the holiday shiney?

Welcome babba! Ds is currently growing lots of nasties from his peg site!

so ive worked out since thr end of april hes had 9/10 infections all treated with antibiotics.

Hes just been given another course for tonsillitis! How the f--- are we going to manage winter like this! Is there anything anyone can do like blood/immune specialist?

Hes got an appointment on the 3rd to see gastros as she concerned about all the nasties on site all the time and amount of abs needed as hes had cdiff in the past.

He should be in hospital but he said its upto me and that he knows I will take him if anf when he gets worse. Hes currently laughing away.

Asd side of this makes jt hard as hes always very happy. Even when hes ill.

darla shiney is right please look after yourself too.

Granny, giddy, shiney, babba and darla how are you all and dc?

X

Hes on prophylaxtic antibiotics and has been for a while. Been changed a few times too.

Hes seeing the allergy team next month anx someone said they are immunologists?

Glad they liked it.

Might be going away ourselves soon. Well if drs say he can go it will be for about 10days during October half term. Dhs sis getting married in Pakistan. I did want to go as I could take him private to one of the major children's hospital in the biggest city to see what they thought about him..

its not quiet here

Ds has now got tonsillitis.

If hes like this now wtf is winter going to be like????!

Hi all, we have had a few days with "homegrown" DD and it was lovely.

Regarding immune problems youngest DD was diagnosed with Hypogammaglobulinaemia at just 5 and has 2 infusions a week into her legs. It has improved her quality of life except her gut (very productive
colostomy ) but she hates me I do all the nasties

Hope you are all coping with school holidays.

The peg site infection is colonising (dr read results on the phone and said apparently they dont need to do anything unless he gets other symptoms like temp etc as apparently its just living on his skin the cant remember if it was strep or staph).
What is a colonising infection?

Granny something definitely needs to be done surely!

Ds isnt used to being home apart from Sunday as mon-fri is school. Sat is shopping and Sunday home. So every 5mins its mama whats the plan

I JUST WANT TO SAY I DONT KNOW WHAT THE PLAN IS but have to give him an answer

Its never come back as its colonising until the last2 infections. She said its growing can't remember if it was staph or strep but it's also colonising. If this is happening at his peg site then there's a good chance it could go further down deeper?

How often does he have iv? And how long for?

Hes struggling soo much right now as the routine has changed from 1 to the other.
We do have a fairly structured day its just im forever repeating myself.

Just checked his temp 3x ans its 35.9 and hes sweating X2!

She doesn't want to carry on giving abs as hes had so many and because hes had cdiff in the past.

Arghh did you manage to save the bedding?

We now have a 9kg washer (thank you family fund!) So duvets, pillows etc get washed regularly too.

Its just annoying atm as no one is standing up to say ok I will sort him out everyone is passing the book around
hes very confusing! Always happy and smiles through everything which doesnt help when the drs are trying to be serious.

.
hes site is looking gunky again

I always try to be direct rather than 'go around the houses' as you dont get anywhere like that!

His site is gunky again and ive got no bloody swabs!

He said it really hurts too.

Thingd got finalised last night we are going away end of October!

First holiday in 4yrs!