how we getting on now with the pegs / buttons?

[Woooozle100]

curious as to how everyone is getting on. Chime in with yr pump / bolus / overgranulation / infection / scary pully out drama tales. Have wondered how yr all getting on

All ok with us - staphococus bugger to get rid of (had 3 courses of ab for dd but still lurking - another swab on friday). Small bit of over granulation.

Must be healing up fine cos dd ok to pull on it and bite the tube. have it taped in circle on her belly

A bit offish over the last few days - reflux quite bad and v windy so have cut down the pump loads the last couple of days. She hasn't been sleeping so well on it.

not sure yet tbh?
in july they will insert a temporary catheter into his spine and over 2 days put small doses of baclofen in, then we will all sit down to discuss whether we have seen an improvement in his tone/mood/sleeping etc before we decide whether or not to go ahead.

im a bit freaked at the thought of something else implanted in him but if it helps him then i have to give it a go i suppose.

the battery lasts around 7 years so he would need another op after that time to get it replaced but the reservoir is just filled every 2-6 months depending on use by injecting baclofen into it thru the skin so no more painful than an vaccination really.

they adjust the settings by radio waves so its all quite high tech, although apparently when the reservoir is starting to get low ds will start emitting a soft beep!

just had a call from the gastrostomy nurse at the hospital and we are going to change the type of ds buttton to an AMT mini low profile one, its about half the height of the kimberley clark/vygon one, so wont be as much sticking out his body for him to swipe at and the balloon is more apple shaped rather than round, the top of the balloon is flat so more of it will be against the skin inside.....hopefully that'll keep it in!!

also getting some 24" extension sets rather than the 12" ones we've been using so hopefully there should be no more swiping hand incidents!!

That sounds good re the button, hopefully it will make all the difference.

I read through that link you posted, it sounds amazing almost surreal, I dont know if I would like DD to have it. However at least you get a trial 1st and if it makes the difference. at the beeping, I think that would freak me!

DD has eaten very well today after a night of hell with vomiting everywhere and taking a few boughts of spasams.

We arent getting anything to control the spasams, she is on clanaziapam and consultant says this should help. Also as the spasams are all related to her stomack that controlling the reflux would be better!

I dont know if its they hurt her or scare her but she gets really upset.

that sounds encouraging glittery. Hope they swap the button over sharpish and you see an improvement (well don't see the button from the other sides!)

Wow am quite amazed by the baclofen implants. I've never heard of owt like that before

How you today Trace? Did you call the hospital?

Hope you are feeling bit better about it all today, Riven

Hi lottie and josey

I'm getting a new pump. An infinity pump. Anyone else use this? Bit arsed off tbh. Got to have new stands, back pack and feeding bags - had to remind them that we need 2 pumps (cos dd is metabolic patient she has to have a spare one. It lives at my mom's house about a mile away) And we've all got to relearn and retrain on this new set up. Had hoped we could keep the one old pump as the spare (still got plenty of bags) that way my mom wouldn't have to get all confused and cross. She could use the one she already has and understands the few times a year she has dd and it'd be fine as our backup pump. But no. Grrrrr

the baclofen implant is a last resort really, we've exhausted all the usual meds to control his dystonic spasms and they are affecting everything, his sleep, his vomiting, his general comfort, so might not have any other choice if the trial works out for him.

just hoping that if we do go for it that its not as problematic as the button's been!

hope we all get our various issues sorted soon and all our kids get chubby and puke free....imagine!

Glitteryb6 to be honest I go on a few forums and chat about buttons and fundo's and have never heard of the problems posted on this thread! DD is 2 1/2.

My DD's button gets washed in the bath by herself and DS when they are playing and that is it. The fundo and button were done at the same time and she was in hospital for 4 days.

Someone posted on another site they were not going to have a button & fundo as they had heard so many negative things about it. However I think people post more messages when they are unhappy!

Hang in there everyone it can work well

cherryc - is this like the bravo tv equivilent thread for extreme tube feeding?

I look forward to everything settling down. I'm sure it will

yeah you've got to admit this thread would put people off! god help anyone that googles PEGS/buttons/fundos and finds us lot!

actually if you do google {PEG button fundo}the third link thats comes up is me posting the first time ds button came out and healed up and josey saying the bleedings turned into a nasty infection and how you could see the disc thru the skin, not a great advert are we!

oh bugger if you google it and hit pages from the uk its the first one that comes up and the second is one of trace's.....methinks we should post some positive stuff!

oh dear sorry carnt post good news

chloes back down to 25ml every 4 hours then on pump from 8pm till 6 ish at 30ml perhour if no change to how she takes it god knows whats going to happen? would love to say take it out but she wont eat by mouth

she is very sleepy due to not having much

oh no trace! whats happening is she being sick if she has more?

what milk is she on can she have a higher calorie one or can they add in calogen or something to boost the calories?

hi pixiemason, I have infinity pump for my 6 y o, no probs except when she wriggles and lies on tube and sets off alarm. Sound then fits into my dreams - weird!! Had granulation badly recently - course of silver nitrate to sort it out.

she just can tollatrate it shes on neocate active and its thinkend already shes just gagging all the time not burst fundo yet but i am expecting it tbh!

we feel like we took a masive step back

trace2 - has she started the gagging since having the fundo? My friend's dd does this. Friend thinks its to do with her not being able to burp. Sorry yr having such a rough time
Hi LGoodLife - pump sounds same as one we've got. Was the silver nitrate a cream or dressing?

pixiemason no only started last week since she pulled her mickey out again ! we now think its cos shes tensing up being scared, we have made a slow start again back up to 35 ml an hour and on pump most of night at 30nl per hour. we have a clear start pump

glad yr building back up again at her being tense and scared

We've been told by community nurses today to clean the site every 2 hrs. WTF? Are we not allowed to go out now or do we have to take our sterile procedure out with us? Not too happy

why every two hours we was told to leave as much as possible as messing cleaning makes it worse

we were told that at the hospital too

confused tbh - we have these dressings but obv not enough to change every 2 hrs. Theres a tiny bit of overgranulation, its red and weepy. Tbh I think the infection has never gone away. The 5 days of antibiotics t'other week not worked - think she's had that much flucoxetine now she's built up resistance. Asked for more maxitrol but need to wait till swab comes back

We've been doing it 4 x daily (where possible) and that hasn't done much. And I'm not going to wake her up in the night cleaning it so it won't really be every 2 hrs