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

[isitme1]

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

O lordie 6.30! Nuff said!

Success and amazing. You would not believe how difficult it is to get blended diet into school, but we've done it! The school were totally backing us because of seeing how Elli is so well and not puking formula everywhere. The dietician put up a token resistance because of all the hospital policies, but ok'd it in the end. BD starts Monday. Better start cooking and blending!

Well done little isitmes DS

Star. Do what we do and blend food to put down the tube, then DS can eat however he likes and still put on weight. Our Elbear looked like a starvation victim so not like Jay who I can vouch for is very healthy looking . You can really load calories (haha foiled DS!) with oils, nuts, and carbs and they are healthy too!

Star oldsneeze is right.
I get so annoyed when caring parents are "put down" when they are doing their best. Jay (15) is under weight is very healthy looking albeit small. He is not very active so does not burn off calories. Elbear is a beautiful boy with CP but has typical skeletal look about him.....he is so yummy!! As I have said many years ago all we used was liquidised diet on older children and guess what they did very well
Having said all this Annabel shove to much food in her and she shits it out via her colostomy [disgust]
XXXX

Yay for them agreeing to do it!

Granny bet your looking forward to your lie ins

Ds has been complaining of tummy ache at the bottom of tummy near bowel. I was giving his meds and he started refluxing and told me 'up in mouth' and gave him few30mls water and that was straight out
so do I give him diarolyte? If hes still sick will get him checked out.

2old - DS js already having 1600 tube calories - plus what he eats - so I am not sure why he is so skinny. He had spinal surgery mast year and we can see all the ironmongery sticking through his skin....and over the last twelve months he has had one bug after another so I am not sure his immune system js as good as it can be.

Sneeze I have no idea how we would get that amount of calories down his tube from blended food in the course of a day without him being on a permanent feed!!

Star can understand your concerns he does seem malnourished. Re immune system Annabel had chronic diarrhoea and while inpatient having a colostomy it was suggested she might have a problem despite me saying it for a year. Yes I was right!! Now has weekly infusions and is a bit better.
Hope things get a bit better for you both

Comlared to what he used to be - constant d&v he is much better. He seems to be full of energy and of course 1600 valories via tube is giving him all his nutrients.

I think that we really don't want to go back to having to do more than one feed in the day. Its just something else to make life more difficult although we will cope if we have to. His main feed is Peptamen and I know they do some higher calorie versions so perhaps that would be a way forward. But I have to try to get the dietitan to think it is her idea!!

Our dietician did try an overnight high cal feed which would go through quicker than the first one which was often vomited back. So maybe high cal? Didn't make any difference that caused even more vomiting. So we are trying to up the daytime cals to make up for the overnight feed.

We are due a new pump here
very excited! We are currently using applix pump from fresenius and now it will be abbott health care. im very easily pleased!

Very easily lol!

Lol. Im bored of this pump and love the nutricia pump, small little pumps this is massive!

in the past few weeks ds has started refluxing more. He's now randomly sick too. He had some chicken last night at 6and this morning at5.30 he was sick. Exactly how he ate the chicken. He choked on the pieces that came up :(
I did think he'd turned that corner but obv not. Hes only on2 meds now omeperzole and docusate for constipation and hes not constipated atm.

DGD----YAY what little it takes to make us happy
We use the applix pump it is so cumbersome. Sadly Fresenius have got the contract here for another 2 years thanks CCG

Hope you are looking after yourself and the DGGS's are OK apart from the reflux. Do you know how much liquid Omeprazole costs? I was shocked thank goodness we have a brilliant GP.

Things not too bad here a bit "fitty" and "shitty" colostomy care not nice
They are in respite this weekend so will be decorating Annabel's bedroom.

Hope all your little and not so little scallywags are behaving.
XX

Gp toldus 150 a bottle which lasts 2weeks
pharmacist says tough its not patients job to worry about cost so I don't lol

Its horrible seeing him go a step back

ooo do let us know how the decorating goes x

2 years today that ds has had his gastrostomy!

Its me isitme
has everyone seen security information?

I couldn't change password so I created new mn

How is everyone?

Welcome ilovemonstersInc welcome to our lovely group, we are lovely, talented, and modest Sorry Isitme our founder member has gone. How are my DGGS's

XXXto all

Lol granny.
The boys are not letting me sleep :(
Mainly ds2
he's getting tummy ache at night and until he farts he just cant settle and this can take hours!
How are you granny

Hey , my daughter is coming up to 15 weeks , she is completely tube fed were in the middle of discussing a pump as i have to feed her every hour to get her oz's in.

she will not take a bottle whatever we try.

the company that delivers to us is Abbott there pretty good tbf

daughter has only been home since Tuesday for the first time so its all pretty new too me.

sometimes i feel guilty because its obvious at some feeds she really doesn't want the milk and im forcing it down.

Welcome mummy
I was reading your thread about the bus before didn't have time to write anything as boys started

im due to get a pump from abbott next month as our feed company is changing.

How much does she need a day? How would you be able to do it over a pump? Ds has 800mls a day 4x 200mls feeds and each feed lasts an hour. We did try bolus feeds like your doing but it would come straight out.

I think if shes refusing a bottle leave her for a bit dont force it as that can make matters worse talking from experience

She never takes the bottle wr just keep trying it ..

she is on 20mls every hour for 24rs.
she just screams when she doesn't want it and tries to attack the tube lol.
but she is already on to Lil milk so cant reduce.

im not sure how the pump will work , i have an appointment 2moro with dietician and surgical nurse.

how old is your Lil one

So you might be able to give say 40-60 over an hour so you can leave her be a few hours between?
Might be worth mentioning something like that. With a bolus its like a rush of feed andwith tje pump its drops so hopefully she will tolerate a bigger amount over a longer period of time.

Must be tiring feeding during the night too (every hour!)

Have you applied for dla? And then carers? Your dd should be entitled to it.

Ds is still very refluxy. Hes been refluxing a lot last night and is complaining of tummy ache near his belly button under his peg hes serious about it too as we tried to cheer him up but didn't work :(

pump wise we do a feed after offering breakfast which 9/10 he refuses. Then a feed after dinner which around 6/10 he will refuse. 3rd feed after tea which if hes had dinner then he wont eat if he hasn't then he around 50% he will eat. His last feed goes on at night around 7/8ish.Hope ththat makes sense

Nope you completely lost me lol .... My daughter has bad reflux , also big feeds at once feels her stomach to much which she cant as it pushes her diaphragm which is a gortex patch rather than a real one and us adnormaly high , which means it pushes up in ti chest. . We have tried 3 hrly 2 hrly

Basically lol he has 4 feeds over an hour each time.
Morning afternoon evening and night. I got confused writing previous post lol

Hi mummy. I take it your LO had the diaphragm hole thing where the abdominal organs push into the chest cavity? Does she have an ng tube then? Don't mean to be nosy but if I don't understand the overall picture I can't pontificate and talk a lot of nonsense give you good advice

Her main problem sounds like the reflux aggravated by the operation, maybe her stomach is still very small? I guess she is already on all the reflux meds? Ilovemonsters is the expert on reflux and medications.

Have the nurses who see you or the docs given any advice?

Yh she had congential diaphragmatic hernia, she had a severe case and heart problems also another lung syndrome called kartengers .

the main issues with feeding is reflux and the bottle also effects her breathing. She also doesn't tolerate milk too well.

she is onperazole, ranitidine, donperedone and Gaviscon for reflux.

Hello Mummy.
Between us we have lots of tube feeding experiences so you are in the right place!!

I would say that you know your dd best and also your family routine so hopefully the dietitan and nurse will help you some up with a plan that suits. But don't forget it isn't set in stone so you can change things.to suit.
Can you tell I have been tube feeding Ds for nearly 16 years....

On a plus note he ate some breakfast today!! yesterday he said he wanted to try chocolate croissants so I got some. Of course being on school holidays helps because he could let his overnight feed "go down" before eating on school days there is no time so he's still full.

We also had a Dwp visit so I can continue as his appointee when he gets to 16. Letter said we needed to show ID so had the whole house in chaos trying to find the only two things that were on the list that he actually has (nite having a rent book or bills....) and the guy didn't want to see it...