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

[isitme1]

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

Giddy can I ask is el ill a lot? Ds1 is ill quite a bit but mainly due to his chronic constipation so is off school at least once a week for a clear out and I feel really bad that hes missing out. He had hosp appt on Thursday was ill Friday and was ill yesterday and is ill today. Hes got a bad chest so has a horrible cough which is making him sick and he hasnt been tolerating his feeds too well so they havent finished on time for school do you think that's ok?
I guess that ^^ applies to every one to answer. please

I wouldn't say he gets anymore poorly than a NT child. He gets mostly a cold and coughs. But they are never really bad enough to have a day off school. I can't remember the last time he was feverish, or had D&V.
We are on top of his bowels now, he goes every 1-2 days and usually has a good movement on the toilet (with the help of a suppository just to get him started) I know it's not ideal but it's better than the alternative, of him being in pain and constipated, because with that comes the puking and the weight loss.
So annoyed that they cancelled your appointment without telling you, maybe complain?

I found the letter I assumed it was just a reminder letter
his constipation is still horrendous. .

Hes due scopes next week and has started to cough and has a temp which is responding to calpol so im guessing viral rather than bacterial infection as hes well in himself will they cancel his scope?

They may do, think it will depend how well he is on the day ??

Well took him to be checked they said they think it's viral so give him more calpol. Hes 17kg in 30months hes put in 8kg

Meant to get back earlier, DGD re constant infections has DGGS1 had his immune system checked. Annabel had continuous infections and I kept banging on about it but was ignored (how dare they ) Eventually a paed listened guess what I was right She is now having weekly gamma globulin infusions and is so much better!! at letter that is so like me!!

Giddy is your old mum OK?

Mum's ok, still got a bit of a cough, but otherwise fine.
Just plodding on here, need to start school run routine soon, take care all x

Ds goes for his scopes this week. Not looking forward to it.
How is everyone?

Good luck with the scopes this week, we're all fine wanting to go back to school!
I'm jiggered 12 hr shifts on very little sleep is bad x

Thanks. As horrible as it is to say im glad hes bleeding inside atm so they can actually see whafs going on. Hes now complaining of some pain in the bottom of his stomach too. Im wondering some tumny cramps? So now bottom of tummy, peg site and middle of chest tummy which im guessing is esophagus? Thats hurting him plus some limb pain. Plus black blood specs in poo and fresh and coffee ground blood plus orange from aspiration that should be enough to keep them busy tomorrow

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Ignore that

Lol!

How did it go? When will they tell you the results.
I know it's awful, but at lease he is able to present his symptoms when they are scoping to get the full effect.
Crap holiday here appointments every day, poor El. Going to take him to sandal castle today as part of his homework, don't think he'll be impressed though!

I was meant to copy and paste what I put on a different thread lol. He wasa pain in the arse yesterday as it was too much for him to cope with at the trwin station so we had a melt down. Once we got on to quite part of train je was fine. Hes bee nil by mouth since around 4-5pm yesterday apar5 from water so ive been giving water feeds instead to keep him full. The bowel prep has worked pretty well lol.
We've been up since3am. He woke up being sick and had tummy ache and hasnt slept since. Im on periods to have a headache and toothache so its taking the piss!

hes first on the list to go down just waiting for the anaesthetist

Outlook most likely colitis

Dr has just been again theres redness and inflammation in the colon so most likely allergic colitis

Hel?lllooooo

Hes now losing bright red blood in his stool. Its mixed in with stool so not from pushing or anything.

Fackin hell.
Ds2 is poorly too
I have an infection in nerve of tooth that needs to come out but cant get thr time to have it taken out.

Aw monsters, sorry to hear this, how is he now? Has the bleeding stopped? Did they offer any kind of treatment for when he has flair ups? Also an allergy test to see what is causing it?
How is ds2?
Tooth ache is the worst, can DH have the kids while you get it sorted?

Hi all, sorry for absence but life as usual frenetic too many kids not enough time at present .

Sorry DGD your little lad (DGGS) still is having problems and poor little DGGS not well either. Hope your tooth ache is improving as Giddy says it is the pits ouch.

Things here as I said a bit potty, Ben and Jay having seizures, school sent Jay to hospital yesterday as he was going for 25 mins. Ah well.

Speak soon take care XX

Granny hope the seizures stop soon

Ds2 has ear infection

they've done nothing else except bloods. His appt has come through for next month which is not too bad.

how are the boys giddy? Your mum?
How is everyone?

Ohh had tooth taken out and ive got wisdom tooth growing under the one they took out

Oooo, ouch, ouch, ouch. I hate anything to do with teeth, poor thing to have it taken out!
Hope ds2 ear infection is getting better
Poor ben and jay seizures are the pits, I hope they stop soon :,-(
Mum and t he boys are good, elliot is having some Bowen therapy which seems to be helping with the sleep. Fingers crossed!
We're going to a bonfire night tonight that is if the rain stays away!

Hi all, hope you are all OK. Life here bumbles on. Seizures at present not too bad thanks

Jay has managed to do a 1st!! He is on Antibiotcs, he has been with us for 10 and a half years and apart from surgery has not needed them. He has a ?chest infection but seems very chirpy as he is going into respite tomorrow I have given in.

DGD hope all is well and hope your mouth is feeling less sore.

Giddy what is "Bowen Therapy" I am a lazy cow I could look it up

xx