Peg Advice Please

[chorltonandthewheelies]

My ds has had a peg in for 18 months now (corflow). When they put it in they ommitted to tell us that it would need changed after only 18months. Now my little one is oxygen dependant (amongst lots of other problems) and every time he has been anaesthetised he has need intensive care and ventilation as his system shuts down. When he got the peg in a supposed 3 day stay turned into a 3 week seriously ill stay.I would not have agreed to him getting it done if I had known it was to be changed so soon. I was happy with the ng tube and feel I was pushed into the peg. rant over..

Now his nurse has mentioned that this time they could replace it with a different type of peg - she mentioned balloon, that I can learn to replace. Can someone reassure me about how this peg is?

I am extremely worried about making a mistake again and want to hear from real mums not the doctors how it actually is.

I'm not a doctor. Equally I don't have a dc with one - I have one myself (after NGs and PEG tubes), so feel free to ignore.

They could be talking about a tube with a ballon, or a button.

I think the balloon ones are a lot less traumatic/easier to replace - as long as you have a syringe and tap water/sterile water/saline, you can (learn to) replace it anywhere, and it doesn't need sedation/anaesthetic (but you may need to have one to hand).

I find the button gets caught a lot less than the tube did (depends how active your DC is I guess), and also leaks a lot less.

I am happy to send you a pic of the PEG button if you want.

i think the gastrostomy button would be a lot better in your sons case, you will be able to change it yourself (roughly every 3 months) its pain free and only takes a couple of minutes!
they might want to have him in to surgery to remove the PEG and replace it with the initial button but up here the doctors just cut the PEG tube and let the kids poop the other end out!

is a video of someone changing a button

actually just remembered you live quite near me!
did he have his PEG at Yorkhill? i think they do the surgery to place the first button.
we never had a PEG we went straight to a button as we go to the Sick Kids in Edinburgh, but if we'd gone to Yorkhill it would have been the PEG first

Hi Glittery thanks, it was Yorkhill who did his peg. They have said that in his case they will need to remove it as he has bowel problems. (caused by the peg!)

Thanks for your response to snowmash, will definately push for a button, feeling a lot more relaxed now I know more about it.

Another one here with the mic-key, with no problems.

I change the balloon water at home, using cooled boiled water and a syringe which is delivered with her feed monthly.

I change the whole caboodle every six months or so (usually when she is asleep) - you do not need to sedate the child. Its easy to learn and saves a hospital visit.

My dd2 has bowel problems too - not caused by the peg, but the peg does help get the medication down more easily!

Hope you get it sorted for your ds.