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.

ooh will give that a bash, riven

It seems to have been friction a blob of cream has sorted it all out.

After a few perfect nights, madam was back being sick through the night, dont think it was the pump, but the thicker lumpier dinner she managed

Im trying to use as little as poss round the site so if she does need anything it will be effective IYKWIM.

I think that's wise, josey. We've used 2 tubes of timodene sandwiched by tube of maxitrol and had 2 different dressings in the last month (and 3 courses of ab).. not settled entirely. Maxitrol was most effective at clobbering the over granulation. Think the problem is infection is nearly going but spores are remaining after ab so it flares back up again. We've been told to clean at least 4 times a day. In the hospital they only said to clean it once and too much cleaning could spread the cack about more and not be such a good thing. Bit confused tbh. Gonna try riven's suggestion. I'll burn her stomach away with steroids at this rate

we had letter t'other day saying our pump is being discontinued (kangaroo) and we're getting a different one. Bit annoyed really cos I know that one now and showed me mom how to use it and she's finally got the knack of it... Grrrrrr! Least it may be quieter

Its bactroban we have, its very good, I had a yucky toe the other night caught the nail and it filled up, I put a blob of the cream on and it was gone the next day. I was told it was Eye cream but it says its to be kept away from eyes
Do they know what the inefction is?
Im really naughtly and only rinse DD in the bath then turn after, I have to say I was careful till it healed. Im thinking I might use vasaline with aloe vera to keep the skin soft, so the other stuff clears if there is bacteria.

I have a Kangaroo as well, its the same as the hospital use, though on a smaller stand. Your Lucky, my mum being a cow about feeding DD infact DH only does it when he has to and has only set the pump twice, and fkd that up....our pump is very easy, just hate the whirr every few secs, havent heard about it changing.

I did get a let today with a dietition and nutrition nurse.counciller appoint for a few weeks, anyone else had this since peg in?

Also Pixie have you noticed if your DD is different at night with the pump ie settles now when it is turned on? MY DD seems to get very restless then about half an hour max after pump on she calms and is sound, its like she is waiting for it now.

Aye - had those appts already. Tho think we saw the homeward nurse quicker cos dd had the tots and it went everywhere and peg end needed changing [sorry that was rather unpleasant emoticion]

My dh never put the pump on - dunno how much I trust him to do it properly tbh - I cringed watching him give meds thru the tube, taking syringes off sterile tray and putting them on the floor. arrgghh! Me mom wasn't best keen and was v anxious about whole thing but I stopped with her for wkend and talked her through it - and she made lots of notes (dh and I were going away for the night - was booked up way before we got date for tube) Mom was fine and coped with it all grand.

My dd looks quite happy when she sees the pump but does tend to be bit yampy at first. Yeah - like what you say about yr dd josey. Last few days have kept her upright at first then put her down asleep. That's cos she's been really bubbly and sicky tho

As DD is just 8 months and is still on milk she gets her meds 7ish with a bolus then is in her cot soon after, she mumps a bit I usually have the pump on for half 8 and then she is away by 9. I have a wedge pillow under her sheet so she is tilted and if she is grumpy I roll a blanket behind her so she is side on, works wonders.

After the break down I showed my Mum how to do an NGT, she babysat one afternoon DD needed fed but she only did oral.

I was at her house at New Year DD needed fed I said I will show you and she basically rn off and said she would be back!!!!!!!

My DH works away alot and Im really worried what if something happens to me who can do it?
Pixie are you in Scotland?

By way have to say DH very good at sorting syringes and laying out meds bottles for me to sort!!!!
I used to change the NGT also and he was the one that said in the hospital that we needed to do it and be self sufficiant....he did it once in 6 months

Boo josey - tho sure if needs must she'd step up to the mark. Or community nurses / complex care team would have to come out if something happened to you. Don't worry. It would still happen - yr dd wouldn't be left.

nah I'm in brum

Her HV is a trained Nurse and has out of work contact with us etc so do others we are small comm so it helps, I just fell crap that others havent stepped up the way they would, I almost wish somethign would so they could get a reality kick up the ass!!!!

I Have to say where we live everyone involved with DD is great and it makes the rest pail away!

Sorry just wondered by the way you said a few things, my next door nub is brums

[not sure what emoticons most appropriate!] ds button came out thru the night AGAIN! hole totally closed up this morning so off thru to edinburgh again to A&E.
luckily it was the same surgical doc that was on as last time the hole closed over (6 wks ago just!)

she had a lot more trouble getting it open this time, she struggled a bit but eventually got up to a 12FR catheter but the button wouldnt go in. she asked the ward if they had any 10FR buttons but hospital dont stock them, just as well as we had a terrible time trying to get spare 12FR buttons when we couldnt get the 14FR back in the last time.

the only other option was a GA and surgery to expand the hole but she was persistant and thankfully eventually forced a 14FR catheter thru so the 12FR button could go in, bit of blood and much grumbling on ds's part but much better than the surgical option!

went to xray to check the position and doc said to give him his feed before we left. probably due to all the probing about but as i was putting it in the tube he was firing it out his mouth which was fab in a way as the doc witnessed it and now they KNOW the fundoplication definately isnt working!
shes going to bring it up again with the surgeon at tomorrows meeting.

we're back up tomorrow for his neuro clinic appt about his sleeping problems and i'll also see the gastrostomy nurse to see if she has any ideas....think i'd be as well moving thru to edinburgh eh?

oh yeah and that was with a dressing taped over it to hold it in!

gonna tape the button directly to his skin with micropore tonight!!

oh what an arse glittery. Sorry to read this [absolutely exasperated emoticion with little hands pulling out clumps of hair]

Would they consider a peg? Eeek I know its more cumbersome and but I have a friend whos dc reverted to peg cos she just kept pulling out the button. Dunno what to suggest really. Pfff and a double disco of shit with the fundo as well Hope tomorrows appt throws up some useful suggestions / actions

Oh No it seems to have been PEG hell this weekend.

Riven they told me to expect the sickness and reflux to be worse. It has been better for us but we did have the NGT before which made my DD soooo sick.

She is still sick, but nowhere near as much and the Ranitadine Domperidone and gaviscon make a huge difference.

Surely a CN can come out and do the turning for you, we were offered this but just chose to do it ourselves. If its difficult for you its a bit mean they dont have someone.

Gliterby your poor DS Im afraid if that kept happening to DD I would get the peg put in.
Maybe wrapping him up in a tubie grip overnight on top of the dressings might work?!

that's cack, riven. Sorry yr having such a mare as well.

re the vomiting - this settled for us when we started adding carobel to the pump feed. Could you give that a bash? Also we have restarted domperidone. Only other suggestion would be giving the feed at lower rate on pump.

re the infection - don't feel guilty. Doubt it is anything to do with you and the cleaning. You said days ago it was looking red. Tis very common for them to flare up from time to time. pita to treat but cream / dressings / ab will sort. Its not yr fault

Dds tube is over granulated and was infected but it's all clear now. I have to say I'm loving the button, making a big difference to daily life especially when she's poorly.

I'm sorry it's a bit crap for you atm Riven, we never had a peg so I'm not sure about the advance malarkey but the community team should defo be there to help if you want it, or is there a school nurse who could be trained to do it? Re the pump over night, I know of a lady who used a hot wheat bag to warm the milk given via pump, she said it stayed warm for quite a few hours, they could manage a four hour pump feed in the evening, night time, hth. xxx

saw the neuro today about ds rubbish sleeping habits and explained how the surgeon thinks its dystonic spasms that are making him sick/causing the fundo to fail.

told him about all the other things we have tried so far and he reckons the next step is the intrathecal baclofen pump, he needs to grow a wee bit more in length yet but we have scheduled in a 2 day trial of it in july and if that works we will go ahead with the intrathecal pump.

in theory it should curb the dystonic spasms without the need for all the other drugs he is on at the mo and should help the sickness and sleeping problems too.

in the meantime we are juggling the timing/dosage of his drugs again and the neuro is going to speak to the surgeon about the fundo issue.

not sure if i want it redone tighter if it means he can only eat pureed food, so ive told him i can cope with the puking if he continues to gain weight, he is 12.4kg now, so if we can keep the sickness to a few times a week we should be ok!

also got the gastrostomy nurse to send off the button that came out to check for culture & sensitivity to see if we can find out whats causing them to come out so easily....she reckons the balloons must be failing?

glitteryb6 so sorry about ds mickey coming out again .

and you to riven about dd just losing weight again since her micky came out last week! no idea whats happening every time we try to feed her shes gipping and tolerating the milk she back down to 210ml a day, am getting really scared . tomorrow am going to ring hospital

these buttons/pegs are a pain in the arse arent they!!.....insanely jealous of cherryc having no problems

Gliterby what is the intrathecal baclofen pump?

Riven could they possibly use the back pack type pump which you DD could have for a few hours druing the day?

Im afraid I Nuck the milk for a min before I put it in the bag. By the time it runs through its not hot. Im not sure long it stays hot for but it seems to be working.

Hope things work out for everyone soon. When my DD starts with the pursed lips and the gagging swallows, I have just started draining he stomack by leaving the PEG open into a bottle or the sink. Im only letting out about half an ounce but its stopping the full feed coming back. Plus its more comfortable for her, because she trys to hold it she vomits through her nose The things we resort to!

josey...its a device implanted below the skin that delivers baclofen directly into the nervous system so uses much smaller quantities than oral baclofen

www.baclofen.info/pages/CP/CP7.htm

Glitteryb I cant believe some of the things they can do!
I dont know how I would like that though, I suppose if its effective!!
How do you feel about getting that done?