developing trust with feeding tube help

[CDavis]

My 5yr old got a feeding tube (the mic-key button) about a year ago. We've always let her control who touches it and when. This makes changing it really hard, but we only change it quarterly.
We've started running it into the night and come in to disconnect it late after she is asleep. She doesn't want us to touch it, wakes up crying and or screaming every time we try to take it off for her. However she's too tired to do it herself.
Maybe we made a mistake in the beginning by giving her total control but what's done is done, I can't go back. What do I do now?
How do I help her gain the trust she needs to let us help her with her tube after she's fallen asleep??? And while she's awake also?
Any strategies?

 

[Aboveallislove]

A family therapist whom I trust on feeding issues gave me a great article on bravery training which I'm doing now to work on throat cultures and blood draws. Basically, the idea is this: Get a new stuffed animal or puppet and give it a feeding tube and explain that the puppet is afraid of anyone to touch it, but that you need to clean it. Ask her to help the animal/puppet be brave. Make the animal talk, express being afraid and have your little one hold and talk and tell her she can do it. Say that by patting the animal on the back, it helps be brave (or hugging something--we use a banana toothbrush). Then just have her touch the fake animal tube gently once with the animal and have the animal express some fright but get over it. Have her tell the animal "great job" ("two thumbs up"), something, and give it a hug. Leave it there. Later say you have to do soemthing more invasive with it and do it more and more. Then during the day when calm, work up with her. Have her have the same things to do when being brave, like hold something and do it maybe step by step, starting touching near on the skin, but not it, getting closer, touching only 1 second, etc. etc. Each time, praising for being brave "I know that was hard. You were very brave." Let's call daddy/mommy/grandma, etc. and tell them. Work up during the day/evening as much as possible, slowly. This is the gist, but you can think through exactly how to execute--the idea is the animal start scared and she learns to teach it coping and it becomes brave (and the animal talks, calls and brags about being brave) and then she uses same skills and does it slowly and is told that you know it is hard and that you think she can be brave like "baby bear" or whatever, and post little steps good praising and calling folks, etc. Good luck

 

[CDavis]

Thank you! We will try this.

 

[Jane]

It is wonderful that you have given her control of her g tube. In the long run that independence will be empowering. Both my boys (young men now) have g tubes and I wish we gave them the responsibility earlier. It took several years to wean them of mom and dad's help.

It's ok if you allow the tube to sit overnight or until she's ready to remove it. My kids do that every night. They disconnect when they notice its done, or when they wake up. Of course they have the alarms shut off