Daughter got gastrostomy button - anybody else out there? Advice welcome

[Hazey39]

Hello there

My daughter Neave got her gastrostomy operation on Wednesday and it seems to be going ok so far. It is a button and not a peg. This is the third night we have popped the extension set on to her little feeding port. Trouble is that it is totally a two man job just now as she goes a bit nuts. My husband chats to her and holds her arms whilst I battle with her legs between my knees whilst using both hands to attach the extension set and lock it in. At some point it will have to be done by one of us. There are some nights out planned in May where one of us wont be here for night feeding time and my husband is going to Cologne in a month or two for a few nights. Will this get easier? Is it just because it is new for her? In the hospital they did it when she was sleeping which is ok as the cot sides came right down so they could get access easily. Our cot sides dont do this so it would be a bit tricky.

Look forward to hearing your replies and advice.

Hazel

Hi, you dont say how old your daughter is. Mine was about 6mths old when she had it until she was 2.5. I used to make sure I left her fully clothed so that she couldnt see it attached to her tummy when I was feeding her and sat her on my knee chatting or watching tv whilst holding the syringe, Sometimes I would get her to hold it with me. We also pretended to feed her dolly the same way.

I was, and still am, very lucky in that my daughter copes and seems to accept anything she has to have. She is very brave.

What works for one child wont necessarily work for another, it may just be a case of trial and error with her. What it boils down to though is probably fear so I would definitely recommend making a game out of it. Get some fresh syringes and fill with water and let her play squirting water out of them, or even to squirt water in her mouth or dolls mouth.

Good luck, I'm sure she will get used to it, hope things settle down soon.

Hi there

Neave is 14 months old. She feeds orally through the day (three bottles and her token solids!) then she is topped up via the pump through the night. I actually found what you sid helpful as I have been lying Neave down to get the button in. I decided after reading your message to try doing it when she was sitting and it worked brilliantly - I did it on my own - it is now a one man job! She didnt cry once either!! Thank you very much

Hazel

Hazel, am pleased you seem to have cracked it. As I said, its all a bit of trial and error really. Fingers crossed it continues for you all then you get to enjoy a few nights out without worrying.

Good luck.