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

[isitme1]

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

Lockets personally just go with the flow as r3dh3d has said every ward is different. I have had both girls on the cardiac unit and Stefen on many wards but he was on TPN and had a severe latex allergy so we had a side room. As said parking awful and we always use train and taxis. Good luck.

Hope you other rabble are OK speak soon xx

Been busy a few days looking after giddy and el and al while daddy having OP on knee. I am knackered trying to get elbear to sleep a bit better but at least the night terrors have stopped.

Poor little DS isitme he's had a really rough time lately and to me it doesn't seem to have been right to send him home. Did they do some biopsies so rule out crohns?

No idea about GOSH sorry, all hospitals are a nightmare to stay in as no sleep is an integral part of a hospital stay!

Redh3d good luck for the OP tomorrow. It's definitely preferable to a ng tube. It sounds as though your DD now has a severe oral aversion. El has this after a year or so of desperately trying to get food and fluids in and ten usually vomiting up at the end. The peg allows you to step back and let them take their time to rediscover food. Ice cream and chocolate is a good starter food!

Xxx

Sneeze they did half a colonoscopy without bowel prep (which is pretty useless as they couldn't see much due to poo and couldn't do it fully so there's still possibility that the bit they haven't checked is effected)

Ice cream and chocolate are good but to this day ive got him to try chocolate less than half a dozen times.
Ice cream is a complete no no for him.

how is everyone? ?
X

Hi all. I'm madly packing for hospital while trying to make sure DH and DD2 will not starve to death or go naked due to lack of washing in my absence. Have not quite got to the point of leaving dressing instructions for DH so as not to put his pants on over his trousers. Not quite.

DD1 is on very good form in the absence of the tube - ate half a slice of toast and peanut butter this morning without chucking up. So we're not going to have to rely on ice cream and chocolate: which is fortunate, as dairy gives her brain damage!

Good luck for tomorrow, hope it all goes well

Good luck will be thinking of you tomorrow. You will not regret it
XXX

Good luck!
As granny said you won't regret it
x

good luck r3dh3d hope it all goes well

How did she get on?

Ds1 has had a full kinder surprise (chocolate bit!)
It was ds2 appointment today and he will be checked every month by hv (measure head) amd if the measurements dont line up then he will have to see neurosurgeon.

All day ds1 has been trying to sing the alphabet which consisted of "abddeimnpos' lmao.
Was very cute.

Hormones are getting to me and ive been a nasty bitch. Have got scan tomorrow so I think its nerves.

How is everyone
x

Helllooooo
annnyyy booodddyyy there??

We're here in spirit if not flesh lol. Been kept busy this week with Elliot's appointments and he has an awful virus, dh is downstairs with him tonight, but I've already been down twice to help settle him, we're even piggy backing the calpol and calprofen in an effort to keep his temperature down and him feel not so grotty.

We've had the adaptations lady hereto look at the house to suggest ways which we are able to modify it for Elliot, he needs a lift and a shower room putting in. And we need to build an extention to replace the dining room which will be used to have the lift in, and it looks like they will be taking away our box room and making a wider landing, feeling a bit depressed about it all, but I suppose needs must.

How are the boys isitme?
2old how are you and your clan keeping? Hope you are keeping dry x
Hope the surgery went ok R3dh3d.
Mum had her eye zapped yesterday, so at least she can see out of it again. Well best get some rest whilst I can no doubt I will be up again in the night seeing to the poorly one.

Awww. Thankfully these2 haven't had a high temo for over 2months now!

Ds1 has pain in the roof of his mouth? ??
Ds2 has a bad chest but is now on inhaler so should settle soon hopefully

so will they sort funding out to do thr mods or will you have to pick up the bill (I know its to help so eithrr way im sure you dont mind just being nosey lol)

sneeze hope you can see better

x

Hey up

We're back. In body, if not in spirit (sharing a bed with a highly grouchy nine year old in a ward where nobody EVER turns an alarm off does not make for the most restful sleep. Or any sleep at all, for that matter.)

Horsey piddle (sorry, that's what DH calls them, with a shocking lack of respect for our dear NHS) didn't give us any aftercare instructions at all, on the basis that all community nursing teams do it differently and so when we get home whatever the hospital have told us will turn out to be wrong.

Community nursing team are ignoring us. Tossers.

So here we are, home alone with a PEG and I've no idea what to do with it (other than insert food/meds, which seems to be going perfectly well). Sigh. Any pointers? Have already had fight debate with hospice team (who came out to give me a break when we got home, bless them) about whether all the water you put down it needs to be boiled or not. They said they always do, so it must be right. I said they deal with immune compromised kids all the time. H most certainly is not that, and on the basis I'd give her a drink of water from a cup without boiling it, why the chuff boil it just to put it down the tube? If it was leaking through the sides of tube and getting at the wound, it would be different. But it's dumping straight into the stomach which is a scary pH 2.5 and will kill germs almost as efficiently as the kettle. No?

Hi I can see much better now. Was getting so fed up wandering around thinking I was underwater!

The LA will pay up to £30K for the adaptations. A third off that goes on the lift alone but it's much more practical than a stair lift. They said they will only pay for what is necessary and as we are not having ellibean downstairs all on his own, they won't build an extension for downstairs living.

They will put the lift in the corner of the dining room but if you need the space you can send it upstairs and it won't show much apart from two silver bars up the wall. They will put a walk in shower area into the bathroom and other adaptations like a pull down changing table. The small 4th bedroom will go as the lift will come up into it, but I think when it's all done life will be much easier and settled. El is sooooo heavy now

Baby al took his first steps yesterday at 10 months, surprisingly steady and really chuffed with himself.

Hope the littluns stay reasonably well and keep improving isitme as it's going to get even busier in your house! Fingers x for the head measurements of DS 2. R3dh3d. Hope all is going well. It was around a 5 day stay for el so I hope you are surviving the boredom, anxiety and sleepless nights (no one sleeps in a hospital ward)

Poor el is hot and pukey and coughing so it's wall to wall TV and ipad.

Hope all the scallywags are keeping well 2old xxx

El is even worse this morning, just sleeping, coughing and puking. I've bought a thermometer to check his temp as the one we had kept registering me as having a temp of 38+ which I'm fit and well
I've stocked up on meds as it's just a matter of time before Al gets it I hate them being ill.
El has a infusion of coconut water going through in an attempt to keep him hydrated, one good thing about the PEG!
Like am says we have to pay for the extension which will be in time access for El as the front of the house is not suitable for a ramp.
They will knock down internal walls to put in a shower area for El and sort out the lift.

R3dh3d I don't always boil the water, I think like you said it's usually for immunocompramised people, give it a wipe with some cooled boiled water until it's healed properly. It may ooze a bit of exudate which is normal, we had an issue with over granulation, but some maxitol eye ointment sorted it ok.
Then it's just sorting out the feeding regime, just make sure you flush it before and after the feeds and job done.

Thanks giddy;

I have an unfortunate question about poo. And I'm really sorry but it's about to get descriptive, so maybe look away if you're eating your lunch or something.

For I guess about 2 months, Helena has been a bit unpredictable in the Nappy department. We've had stretches of no poo for days and then lots of straining and something the size and consistency of a cricket ball finally comes out. Or we'll get 2 or 3 days of being really very runny. This isn't like her - she's fairly mobile, she eats a variety of things (not always a variety of things that I want her to eat, but still, it's variety) and as a result she's always been in the comfortable middle ranges of the Bristol Stool Chart. I was beginning to suspect fecal impaction, but a number of passing doctors have felt her abdomen and pronounced it perfectly soft.

Over the last 3 weeks, it's been very runny indeed and if anything it's still getting worse. It's as if she's got D&V without actually having D&V iyswim (though it's possible she did have a mild bout of it at one point because it was going through school, but she never ran a temperature and it's just gone on and on and on...). We are getting through a lot of trousers, plus I'm trying to look after a post-op wound, for chuff's sake.

Any idea what might be going on? It doesn't co-incide with anything precisely, but it does seem to be since tube feeding started in Oct. She's already on a low-allergen feed because she can't have dairy so I'd hope that's not the problem.

I would say it's the feed if it's coincided with when that started, maybe try and get hold of you dietitian and see if they can offer anything else? Has the feed got added fibre? That upset Elliot's tummy a lot and needed changing

Hmm.
we have a problem with constipation over here.
The longest hes not been was something like 10-12weeks!

It could be overflow (runny poo).
Im thinking she gets constipated and then has a clear out amd then gets constipated again?
Will re-read once ive had my dinner lol

Thanks folks. 10-12 weeks? Dear Lord. Though tbh right now it might be handy...

Yes, feed has got added fibre. Though tbh I think it's the same stuff as comes naturally in porridge and she's been having porridge for years with no probs. I'll start googling contents and see what the alternatives are.

I've got an email logged with the dietician, but she's split between 3 or 4 hospitals so takes ages to get back to me.

R3d - the protocol here changed a couple of years ago and we no longer boil water.Before that other used to depends on age.

With regard to the poo. It is not unusual for tube fed kids to tend towards the lose side but fibre should bulk it up. But DS (who is 15) always had problems with the various types of Nutrini and Tetrini(?). In the end a hospital dietitian tried him on peptamen and he never looked back!! I suspect it is dearer (there have been various attempts to change it)

DGD stop nagging me I am old Glad your 2 LO's are not too bad, how is DGGC 3 doing hope you are looking after yourself

Giddy yeah the snots coughs viruses and shits I hate winter.
Good luck with your adaptations the thought brings me out in a sweat. I am afraid I refused to have a lift in dining room and won as the house is so old. Mind you they knocked the end of the house off and left us over Dec/Jan with just tarpaulin to protect us from the elements. Moral have it done in the summer. How is Steve's knee?

r3d glad things are not too bad, must admit am with you regarding boiled water as you say she can have tap water by mouth. Annabel has an autoimmune problems and needs weekly infusions and she has tap water via her PEG. Jay has a PEJ and I am supplied with sterile water.
Surely our tap water is clean!!
Regarding poo don't even go there I sort Annabel out with Loperamide but still get colostomy overflow

Star you are right regarding Peptamen is the best of a poor lot (she has Peptisorb)

OLDSNEEZE BIG WRITING SO YOU CAN SEE, HOPE YOU ARE OK[WINK]

Love to all your little scallywags

BTW r3d nurses are deaf at night (no giddy and oldsneeze I was good)

Hey ho. Things are going downhill.

OK, H has this gagging thing going on since an NG incident a couple of weeks ago. But she's virtually never "just sick", and if she is, it's because she is ill.

She's not ill atm, as far as I can tell. But her carer took her for a walk this afternoon and out of the blue she projectile vomited pretty much everything that had gone down that day - hours after eating, clearly the stomach isn't emptying properly. Didn't have this problem in hospital, no idea why we've got it now. She wasn't "doing" anything that could trigger it, just sitting in the buggy being pushed along a smooth path.

I left her for an hour to calm down, put another small feed down her (watered down, in the hope that's going to go through faster) and am giving her 2 hours clear till meds. But if she chucks again, I've no clue what I'm going to do next.

This whole tube feeding thing has done more harm than good so far. OK, she's put on a bit of weight. But she's eating a fraction of what she was eating pre-NG, she's being sick constantly, she's got the runs constantly, (either of those things is enough to get her sent home from school for 48 hours): her entire digestive system and relationship with food seems to be utterly f*ed now. And we've had our arms twisted to hack a hole in her - another hole in her - for no appreciable benefit.

I would try her with 24hrs of diarolyte on.
maybe give her a feed of 100mls over an hour
then leave an hour then more if shes ok with it.
see how shes like tomorrow, a peg is a big thing for the body and as its adjusting it could play up a lil.

granny we are all well thanks had scan this week and theres only 1lol and baba is fine
x

hi star hows ds?

rd3, sorry you are having problems but as isitme has said it probably takes a while for the gut to come to terms with having food
Putting my old paediatric nurses hat on if you have a pump start @ 20 -25 mls an hour then up it to 100 mls if tolerated. Make sure she is peeing. (if you haven't pump you will have to gravity feed) Someone should be around to support you!!
Probably teaching my grandmother to suck eggs.
Seriously the PEG saved my sanity.

R3d....I agree with the dioralyte or coconut water to give the stomach a while to settle. It sounds a bit buggy to me and if she had a bug before the PEG her gut may be inflamed and need a bit of a rest to recover.

I would otherwise say it is not the PEG but the formula. So many kids are pukey and either constipated or runny on formula. Get in touch with the gastrostomy/community nurse and ask for a change in formula. If she did well wrt vomiting and bowels before on food alone it's possibly the formula.

We had endless vomiting and constipation and weight loss with el on formula and changed to blended diet which has been a life saver for him. It's basically putting food down the tube but I think at the moment this is a bridge too far to suggest for you as you need to get the gastric problems sorted first.