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

[isitme1]

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

Both have been done again so he should hopefully be able to put2+2 together.

There was someone up thread who had a dc on a 5kc shot which something like 5cals per 1mls and they added 5mls to give more cals in smaller volume. This was added to normal feeds? Could this be done?

Feed went well at school. We've reduced that feed and added the remaining to the evening and night feed so it can gonon slower amd him tolerate it better.

I really do hope that he gets better soon x

just a thought where you went om holiday did they have a co2 detector? Could he have co2 poisoning?

I dunno how that works out but just trying to think of another possibility

when I read that this morning I was like about the poisoning. I was just trying to think outside the box lol.

Hope the scope goes to plan and if they dosee aanything that they treat it asap.

How long did they say it would take?

Hope the results come back quickly to help they make a plan for him.
How are the others doing?

He did a poo in school and they have to change him stood up and they didn't clean him properly which will now most likely turn into an infection as his nappy area is so red anf swollen.

Had a horrible dream about him being in hospital and them finding out what's wromg but they were unable to treat him.

Ds2 (scoliosis) keeps falling. Before he goes to nursery hes fallen around 4x (9am in thr morning)
today hes fallen outside and his tooth came through under his lip
bled a fair bit. Managed to keep him comfortable at home as within minutes he was running around again

nutrition.nutricia.com/products/liquigen

His teeth are fine but lip is swollen on one side.

His bum has got bad again.
Going to email consulant and ask if cdiff results have come back and if yes what is it. Dont want him on antibiotics if hea not got cdiff.

Ds has a bit of an malabsportion issue but no where near as bad as your ds.

I would get headache from looking at a screen at night lol.
I downloaded books, read news, watched youtube.

Ive emailed schools senco who sorts everything out. She works 2days a week si will be next week when I get a reply.

Hes got raised patches on his skin in the nappy area

when ds had his tube first put in there was a little boy who was under investigation as no matter what he ate he was still loosing weight. Mum was called emma cant remember what he was called. I remember her taking him home to feed him the fat from sunday dinners and he still lost weight.

How are you coping in hospital?

Lol ive lost half a stone nearly by eating once a day and having cuppas for other meals! Around 3 weeks to do.
Still very fat but gettinf there lol

Im absolutely knackered.

Need to get up some how and make his feed for morning arghh.

No energy left lol

Need to have a cry I think.

Calproctectin test come back normal and cdiff negative.

So now hes going to say theres nothing wrong with him
the raised one is from when he was having a flare up.
Ffs.
How can I help him.

But hes going to completely ignore the 200 result noe

Sorry meant to come back to ask how ds is today x

Hes off school today. All bleary eyed like hes comimg down with something. I think its his bum that's infected all swollen and red.
Hes got some tummy ache. But thats what you get for eating foil well he atw some a few days ago and poo'd it out and last night this morning hes in pain.

Glad hes managed some time off o2.

I know first hand experience when shit gets bad you try and look for someone to blame and sometimes if its not clear we blame ourselves. But its not our fault. Its not your fault. These things happen for a reason (dont know what exactly) but you are his voice you have done soooo much to.help him theres no way you would let any of them down. Dont worry about that. Tske one day as it comes.

can you tell ive not had my cuppa yet lol^

how is he today?

Bless him. I do hope you manage to get home soon!

your human. Theres only so much you can hide before others can read it on you. You can tell by body language too I had it before I got married. That was the reason I dropped out of college. I had to be at home. We had just been robbed and j felt it was my fault as I wasnt home.

I know totally different situation.

Hes nodded off a few times and hes been looking rather flushed like hes got a temp but hasn't. Temp bang on 37.

Have not been ignoring you life absolutely frantic!!!

DGD do not know what to say re bowel problems DD5's calprotactin still 800+ despite enemas and IGA infusions. ?Fortunately she has a colostomy so no more sore/infected bum!

Shiney so sorry about your LO. YEARS ago our C/F kids were very prone to pseudomonas infection which really knocked th3m for six. Re Liquigen I am sure it was given to children with epilepsy as it was very high in fat....Ketogenic Diet we decided against for DS3 but can see the logic for your LO. Hospital stays are gross I spent 15 months with DS5 (not I stealth boast) 120 miles from home, came home completely institutionalised but I am so glad I did it bless you my beautiful boy.

Not a lot to say except if I waste another morning with S.Services who offer nothing except a patronising smile I will go ballistic.

Keep smiling girls it is all we can do

PS final straw DD3 has had her PIP form through do they think Down Syndrome goes away! Yep trivial moan

Ive filled in both types of forms and both are pitas!

Granny tell them to shove it!

Granny but am I right in thinking they should be doing something to help him?

Its making me fill up thinking about how much pain hes in and him not telling us.
cant cry fot a face full off make up on!

Granny how is everyone?

Shiney how is he today?

Ds is passing blood again. Ive emailed both his secretary and gastro nurses.

Same here. Its shit right now. He was begginf to go to the hosp the other night as he was in pain but was still running circles around me - literally. The hosp wont do f.a for him like that.
Consulant hasnt got back to me. Will emailthem some more ggruesome pics tomorrow lol.
Glad your home! Hope you've not got too much housework to catch up on!
How are the others?

Hes losing what looks like solid blood streaks thay are black.
Just wanted to cuddle him all night as I physically cant do anything else for him too much paracetamol is no good either.