Anyone able share experience of PEG procedure / feeding?

[Esker]

My son is an ex-prem (27 weeker). We finally brought him home from hosiptal three weeks ago, age 7 months (four months corrected). He is on oxygen and is still exclusively NG fed. Due to his chronic lung disease, he needs to continue with tube feeding and is due to have a PEG inserted soon. I really welcome this, as the NG tube is a constant worry for me. However, I am nervous about the surgery and about adapting to the new way of feeding.

I know that babies or children may be PEG fed for many different reasons, but if anyone is willing to share their experience I am all ears! Good and bad experiences, all welcome. I just want to be informed.

I'm no help! But didn't want to read and run! for you! We are also waiting to hear about a possible peg for our youngest (no diagnosis he just has a few issues with muscle tone/feeding)

Thanks for your response Imer! I hope that you get an update soon as to whether your child needs a peg. It does sound like scary new territory in some ways, but I also think (hope!) it will help with some of our problems. Right now my son has to be fed so painfully slowly due to his reflux, and I understand that once we have the peg we can safely have him on slow continuous feed overnight, meaning that his day time bolus feeds can be smaller and hopefully he will tolerate them better.

I have 2 kids with complex needs both on peg feeds.
Really it is not as daunting as it looks and just becomes daily life v quickly. Mine both have overnight feeds and feeds during the day as well. They are both thriving growth wise but continued to have problems with reflux despite the peg though the older one has largely outgrown it now he is older ( now 11 and always tube fed ).
What is it that is particularly worrying you ? I am v happy to help if i can Esker x

Hi flapjackfairy, thank you for your response. I'm so glad to hear that your children are thriving and growing well! Reflux is such a pain so you have my sympathies.
I'm not hugely anxious and I do think PEG will be better for us, but I guess the things I worry about are:
Do children find the PEG irritating or pull at it? (Though I know that this must depend on the individual child and their needs)
(for babies) Will it interrupt tummy time / will they still be able to lie on their front comfortably?
How common do you find issues with blockages / leaking?

In fact for me the main concern at the moment (which no one here can help with!) is uncertainty about when this is all going to happen. We are on the list but don't have a date yet, and there is also uncertainty about whether he will need to have a Nissens Fundoplication as well for the reflux. Some doctors seem keen to do this, others not.

Well to answer your questions as best i can .
Firstly they learn to leave it alone quite quickly and they are a bit stretchy so if you do catch it they are normally ok ? Though i have the freka tubes which stay in all the time. The mickey buttons are conected each time they are used. Our eldest pulled his tube once, realised it hurt and never did it again!
Tummy time will be fine . No issues with them being on their front and they can go swimming and have baths with no issues as well.
The pumps can be a bit temperamental but you will soon get to know how to sort any issues there and the pegs themselves do not generally leak or cause any issues once they are in and the body gets used to them . At first you can end up with granuloma round the peg site as the body tries to heal over the hole but this can be treated and really once pegs are up and running they are v effective and it just becomes your daily routine.
Cant advise on fundo as we havent had that yet but i think they will only do that if really necessary. Children tend to manage reflux better as they grow stronger and have better muscle tone .
Are they looking at feeding your little one through a peg for the long term or is it likely to be a temporary measure ?

Hello
We're a month into a peg and it's a million times easier than the ng tube.
The procedure was ok and we left hospital after about 3 days.
It's not hindering tummy time at all now
Good luck