u/petitteckel

My son has been on an NG tube for nearly 2 years (since birth), he is now scheduled to get a gastrostomy in the coming months, so I am starting to think ahead of what managing this new type of feeding will look like.

We have many problems with the NG (retching/vomiting it up all the time), which is why we’re finally moving to G-tube. But other than that, the actual management of setting up the feed outside home itself is pretty easy for us now, take our flush bottle, a few syringes, giving sets, feed bottles, and pump of course. I like to get us out of the house so it’s important to me to have a manageable routine when it comes to the feeds.

It is likely that he will have a mic-key device (after an initial 6 weeks with a different temporary primary device). My uncertainty is on how to manage the connection tube when out of the house for hours or on day trips, as I understand it needs cleaned immediately after feeds. How do you go about this when out in public, without access to your kitchen basically?

Open to hearing any other advice or tips too ahead of making the decision on his device.

My LO is nearly 2 and has been solely NG tube fed since birth due to various congenital defects. Aside from his mobility delays (he’s now nearly/attempting to stand/walk), he needs to be kept strapped in his pram or high chair for feeds as he constantly vomits during feeds.

He is distressed by the sight/touch/smell of food, so it’s not possible to do food play during feeds - because vomits.

Therefore he needs some kind entertainment or enjoyment during his feeds. Due to the discomfort of the feed/vomits he has a very short tolerance for his toys or books during the feeds, therefore it typically results in screen time (solely on the TV in the living room, opposed to an iPad which I don’t allow him to play with).

I feel so guilty though that I know he is getting more screen time than is recommended. But I feel so trapped because attempting anything else results in more vomiting and the consequences of that.

We are hoping by the end of this year he’ll have some kind of surgery to help the vomiting if possible, but his doctors don’t seem too interested in the screen time/development impacts of his current situation. Wait times here are very long.

Has anyone faced similar circumstances, did anything else work for you during feeds, any reassurance on the need to use screen time?