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

[isitme1]

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

There may he other feeds. Our dietitans seem to favor the nutricia range (nutricia homeward are our home delivery company) but ds went through all of the age appropriate ones and had constant d&v. He was in Birmingham children's hospital when their dietitan suggested peptamen - he was just four and it was supposed to be for the over fives (they do a paed version now but didn't then) but she basically asked me to trust her....and the change in him was amazing.

He had the peptimin but didn't tolerate it. Hes had pediasure too and infantrini but can only tolerate neocate which is a pre digested hypoallergenic feed so easier for him to digest. Get panicky about seeing gp for a referral. So far ive spoke to sheffield, pct, nhs England and dietitian. All agree he needs a referral.

Been in hosp with suspected clot turns out it was a a superficial clot so no need to worry (fake clot) but they have started me on heparin injections
dh had to do it for me this morning cant bring myself todo it

how is everyone

Ouch. Sympathies I had to do the injections for a clot in a superficial vein. I hated doing them and I don't think it got any easier over the six weeks! But DH would never have been able to do it for me - he has been known to pass out where needles are involved!!

And I had to go to the walk in this week as I managed to cut myself. Luckily it didn't bleed much but was deeper than I liked the look of so had to get it glued. I now have a pinkie that I can't bend (big dressing) or get wet (well I can get it a bit wet but not doing the washing up wet!) Its my dominant hand and I keep finding things I can't do properly.

Its horrible! Dh just did it again and ds2 tried pulling his hand! So that's made it hurt more!

Will have to do this 6weeks after Ive had baby and im 22weeks!

Not nice at all as those injection sting. You could try a local anaesthetic cream for the needle going in, but it's the thought of doing it is horrible!

Thats what got to me. How can someone knowingly hurt themselves? Dh sticks the needle in me and I pushthe med in. Today ds2 tried to grab dh hand while he was doing it causing the needle to move which was painful. Poor dh face was full of horror!
How are the boys

Good morning sorry for the silence. I've gone back to work and finding the following days quite tiring. El back at school today yay! With a shiney new Mickey button, thanks to Al who pulled it out yesterday on dh watch (I was at work) poor El he wouldn't even let me put calpol down it last night when I got in :(
He's fine this morning, looking forward to see in all his friends, and horse riding this aft.
No advise re formula, we are now 100% food :) although he has lost a bit of weight he's grown 4 cm!

Oooo look

Why us nothing ever straightforward. The dietician was supposed to get the new feed on ds's delivery for this week and said she would let me know if she couldn't. She really wanted me to get a prescription but Peptamen has to be a special order at all the local pharmacies and takes ages to come - and I can't carry 14 litres!!
Anyway Homeward eventually rang to do the stockcheck on Saturday and know nothing about the change. We need something so have had to request the "old" fortisip. They said that they could still do changes today so I have rung the dietician - who is not there this morning - and left a message.
I suspect that I am going to end up with both the old fortisp and new Peptamen HN or nothing. And that I Will end up having to be in for a second delivery...

Arrgh taken me ages to find this again! Bump bump bump

how is everyone

Starfish. That's so typical. Sometimes you spend your life chasing things. It's not all the disability it's the clutter around it that grinds you down! Once you get on top of one thing another one pops up.

Isitme (monster!). Just click on 'I'm on' above and it automatically goes to the threads you are on. You can alter stuff in your settings.

Im having a few days off. Feeling jaded and tired. Hopefully a few days will give me my enthusiasm back. Will do some tube cooking though as I enjoy it

It fell off my im on list as it wasnt active for a few days! Need to add to watching list I think

enjoy your time off

Sneeze - you are right. Its all the extra hassle chasing stuff up, doing other peoples jobs for them and constantly having my tentative plans thwarted as we have to wait in for something.

You would think the hcp would be capable of doing it rather than a patient or their parent!
I rang ds2 consultants secretary last week. She said he will ring back today. It had been over a week and nothing so rang back. She just sounded like she had no brain cells at all!

Many apologies, I promise I am not ignoring you

Jay was in hospital this week (as a day case) was in theatre 5 1/2 hours so we were in for 4 days. Fortunately I ?love the ward and met up with some OLD ex colleagues.

DGD sorry about your clot and your dislike of injections BUT Granny talking here think what my DGGS goes through far worse than a piddling injection a day. But you know it has to be done. When I was working I remember 4 year olds giving their own injections. What a hard hearted bitch I am . Apart from this I still love you and keep your chin up my little one XX

Re feeds I can't even go there. Why is it the colostomy lot are so good and the infusion people can get it right! Feeding lot ARRRRGH

WILL GET BACK HERE WHEN I HAVE HAD 2HRS UNINTERRUPTED SLEEP

Love to all scallywags and your mums and dads.

Poor Jay! That's sounds awful for him and exhausting for you all.

Xxxxx

Aww I hope hes feeling better.

I know granny. I didn't think of it like that but yep a few injections is nothing compared to ds problems. He woke up crying this morning 'my tummy my tummy hurts' been keeping a diary and he complains of peg pain everyday, ive also noted bowel movements, texture etc plus if hes had temp, what hes had to eat etc so hopefully someone will see a pattern. Ive noticed if he eats well hes sick next day or that night.

sneeze did you enjoy your break

Still enjoying it lol

Lol.
Ds is very into green foods atm- green apples, green grapes and cucumber we went food shopping yesterday and he picked up an apple of the shelf and started eating it! They let him have it for free (what would they charge for a single apple lol)

How are the boys and jess

We are fine, I was working yesterday, sometimes I hate my job it's so sad :(
Boys are all good if not exhausting!

Good to know everyone is ok.
Absolutely knackered here! Had lots of uterine pains last night top of bump then bottom then lots of pain with pressure in bum back and stomach they were pretty painful but couldn't go to get checked as both boys were asleep and it was getting late to ask dm again

Hope things are better today, Monsters.

We started ds on his new daytime feed on Saturday. Just half the new, half the old as suggested for a couple of days. The evening bowel explosions stopped!! In fact he has hardly been at all. Hopefully things will balance out!!

I'm thinking of starting my DD on a blended diet. She's currently pump fed nutrini and has constipation problems we are working on using movicol. Is there a good website with a guide to starting that anyone would recommend? I was thinking of stating with a bit of sweet potato blended for brekkie for 3 days.. Does that sound about right? Thanks.

Sneeze should be with you soon. Shes the expert.
Giddy is too but shes busy these days.

How much water does your lo have? Could be water issue?

Im sure sneeze is on bleded diet uk Facebook page it's a closed group