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.

ds has pulled his button out twice, hole healed up once, burst his fundoplication (might be getting redone), projectile vomits at will, gained weight, lost weight, gained weight again (dependant on the puking ratio), blocks tube several times a day by forcing the milk back out of his tummy and arms have to be watched like a hawk when doing the bolus feeds as he can and does have a swipe at the extension set......granulations gone tho!

farkinell glittery! What an absoloute mare

did he have to have to op again?

when the hole healed up? no, it had been out for several hours (happened during the night) but they managed to burst through the top crust [yuk!] and pass catheter tubes in increasing sizes till the hole was almost big enough again, ended up with a smaller size button though.

he will need another op if they decide to redo the fundo though.

and they said the button would make things easier....

hope things do get easier. Eeek - tempted to say they can't exactly get a fat lot worse.

Dyou want the fundo redone again? was it helping with the vomiting / weight gain?

in the 6 weeks before it burst the fundo did help loads, he could gag but nothing would come up and he put on a kilo in the first 3 weeks!

not sure about getting it redone to be honest, the xray showed that he has an "unusual horizontal (something?) tract" which may have caused the wrap to slip.
doc said it was a fine line between making the wrap tight enough so it wouldnt slip but loose enough that he could still eat comfortably.

He does love his food so wouldnt want him to start getting everything pureed, as long as he continues to gain weight and doesnt puke TOO much i might just live with it?

PEG site has healed really well after an infection in the 1st week. No granulation to report.

Reflux still pretty crap bolus can go in and straight back out, though calming down a bit.(teething hasnt helped)

Pump is driving me mad. If I have the monitor at the wrong volume its all I can hear, along with her refluxy breathing.

Supposed to be on 40mls an hour more than 38 makes her sick, also room temp seems to be too cool for her stomack to handle.......so have been warming the milk and it only occured to me to add gaviscon to the pump feed it seems to be helping.

She has put on over 3lbs and grown 4cms in 6 weeks so really pleased.

Do any of you every have any problem when doing the turn and the push back?
sometimes it seems as though its stuck and wont push back with ease. Then the screaming starts.

know what you mean about the pump and breathing noises. DD sounds like darth vader! I play this little game where I 'neigh' along to the pump - see how in time I am as it kicks in next. Swear I can hear it in my sleep. The soundtrack to all my dreams

Congrats on the weight gain and growth, josey. That's ace

DD is deffo taller. Her standing frame is more supporting her shins than her knees now

Dunno what you mean by the turn and push back? Is that the peg disk thing?

glittery - yeah, think I'd do the same thing. Wouldn't want to affect his eating and enjoyment. Can they jiggle about his meds and see if that can help a bit? Dyou thicken the milk at all? We do (with carobel) and that has helped loads

You know when you have to undo the clip clean it spin the tube round and push in so that the skin doesnt form over th tube and disk inside? Sometimes when I push in it seems to stick and she gets upset, I have wondered if its when her tummy is still a bit full.

Gliterby is you DS sick with food or only milk? DD is only sick with milk, I've been thinking of trying to give her something solid to help hold the milk IYKWIM

Shinn support from knees is a huge jump does she find the different possition harder or easier?

oh see what you mean - yeah that would make sense. DD's feels quite loose and free if that makes any sense.

Do you all have to aspirate the tube and check ph contents of aspirate every time you use the tube? I don't think its done everywhere. We were told to do it every time but I tend to just do it once a day before main feed. Well sometimes I have loads of trouble in drawing out stuff from her tummy - feels quite blocked and full and syringe just snaps back down

josey - am exagerating a tad - like the uppermost part of her shin er just underneath her knee. Still its the best growth spurt we've ever seen (she's nearly 4 and not much over 80 cm) Its harder for her in the frame. Its been specially made for her by movement centre so we can't adjust it ourselves. Going there next week though.

Overall have found she's loads stronger and sparkier / active since having the tube

they have upped his ranitidine and domperidone to try and help with the sickness but we think its dystonic spasms that are causing the vomiting as its quite erratic and doesnt seem to be strictly milk or food related, can happen any time really.

we changed from nutrini pepti (pre digested)to nutrini energy (contains milk protein)which has more calories so we could give him less volume without dropping calories to see if that would help but the milk now seems to be curdling in his tummy and blocks the tube easily when he forces it back out, i do wonder if the curdling is making it a bit heavier as he has been a wee bit better since changing

josey, i would be tempted to turn and push more often as it sounds like the skin is starting to form on the inside....only took ds tract a few hours to close over completely so the skin does close back over quite quickly, might be doing the same inside?

really? i only check ph when the button is changed/falls out just to check the position.

wouldnt have thought you should have to do it every feed?

wheres the PEG going to go if its got a disc holding it in, can it move?

i think advice varies from hospital to hospital, one here says to use cooled boiled water for flushing and the other says to use tap water if the child is over 1yr old.

if i was giving ds a drink of dilutey juice i would use tap water, dont see the difference whether it goes down his throat or thru a tube, still ends up in the same place, but bizzarely i religiously boil water every night for next days flushes!

hi chloes pt a little weight on since oct but lost lots more, but gaining again now, she is getting taller though!!

her mickey came out on monday ( we didnt know) was sitting in her vest anyway we avoided going to theathe just, but its now very sore again and she wont let us touch it i now wish she was put to sleep as its traumatised her.

ow poor chloe hope it settles down again soon

We boil the water as well for flushes. My friend (dd same age as mine but had tube for loads longer) has told me not to bother but I still do

have they swapped it riven? We've really had to nag em to do the swabs cos most people who've looked at it go 'oh that looks ok just a bit weepy' then the swab results come back and show infection.

We've got a small silver dressing that has helped soak up the overnight gunk. (Not the big contreet ones cos dd had allergic reaction to them) Would yr community nurses / gp prescribe owt like that?

nah - peg really isn't going to go anywhere - hardly likely to slip into the lungs is it? Think there is tiny chance it can migrate to duodenum but that wouldn't cause loads of damage - just the trots I think.

Hmmm - we're all a bit sicky and gaggy.. And even though the peg is rather big and akward I'm also not as excited as I was for the button after reading these. I'm thinking maybe a wrestling belt over it

Oh another question - anyone else noticed their child smelling differently since having tube feeds? there's deffo a cloying, milky sort of smell to dd. Not rancid or owt but I can notice (maybe masked by the odour of greasy puke though for some of you!)

I would Riven - ain't gonna do any harm for it to be swapped and checked

pixie.... ds and everyone else i know who has a button/PEG now has minging breath...think its the milk!

On having a look at it today I think it is more friction as the site is dry. Its not overly tight but there isnt alot of space.

Have put some Bactroban(?) on tonight to see if it softens the skin a bit.

Riven have you not been given Bactroban to put on when site gets red or weepy?

DD is just 8 months so its SMA High Engery she gets to give her more cals with less volume.And it stinks its like carnation milk, the smell in return is pungent!

Warming the milk for the pump and adding the gaviscon is working really well, she was asleep by 8 last night and the Darth Vadar breathing stopped by half 10.
She slept through till 7.30

Dont have to test it thankfully, she was NGT fed before and that was a nightmare.

Could the breath be something to do with them eating less so less syliva being produced and the acid level will be higher??am I talking S*%t

no dont think youre talking S*%t that sounds perfectly sensible to me!

My DD also gets bad breath sometimes after a feed - not always.

Had a button from day one no PEG and have had no problems. Had a fundo when button put in also.

Button put in November 07 and has only come out twice when to be honest was due changing anyway. We put the button back in no problems.

Don't want to make those of you with problems feel bad just to let people know it can work well sometimes!

hi cherryc - nice to hear of it all going ticketyboo

just finished 2 weeks of timodene so need to lay off it now I think. Got some cavillon sticks. Dunno what good they do. Spread the lingering infection around a bit? Might just clean lots and use the silver dressing. Comm nurses couldn't come out today as planned cos of bad weather. Booked for next fri

dd eats during the day and has pump overnight. Only thing cut back on is the drinking - she barely drank anyway and what she did aspirated on so we've given up on that for now