I'm a nursing student, and I'm NOT looking for medical advice here. Just some input from nurses to a mom. :) My 5.5 year old daughter has had a feeding tube since she was a newborn. She started with NG tube and by 8 months old she had her g-tube. As far as she's concerned it's part of her. As she started to grow up and become aware that other kids did not have g-tubes (she's developmentally and socially normal), we told her that the tube was her friend, and it was one of the things that made her special. That made her okay to have the tube, even proud of it. We were not sure at the time how long she would have the tube, as many people with her medical condition have it for life.
Well, it turns out she is doing really well and her condition is being managed very well. She has had several tube-free trials since age 3, some she does better at than others. Her GI is eager to remove her tube as soon as she meets certain criteria. One of them of course is to go a length of time not using it, gaining weight and growing, and eating through illness. She has met all of these criteria and the GI talked about removing it next week (!!) if she is still gaining to her satisfaction. On our bathroom scale she has continued to gain, so I'm expecting that perhaps the tube will be removed next week.
While I'm really super happy about this, my daughter is crying and upset. She does not want her tube removed. She said that her tube is her friend, she will miss it, and she will no longer be special. I have always raised my kids to appreciate all their special qualities, for example my 5 year old is a good singer, is nice to animals, etc. However she does get special attention for her tube, like when she started K last month I had to talk to the nurse and her teacher about what to do if the tube was pulled out. In the past the "button fairy" would visit when it was time for a tube change. She left her button under the pillow and the fairy left a small gift. I told her that when she doesn't need her tube anymore the button fairy will leave a BIG present for her. She still doesn't want it out. I told her she can even keep her button and the fairy will not take it since she will miss it (I would replace the used one with a new one she can play with or whatever), but she said she doesn't want it out of her tummy. I told her there will not be a hole there, it will close up and she will have a cute little pink spot that will still make her special. It's no going with her. She cries really big sad tears at the thought of her button being removed for good.
Any advice? I need to explain this to her in a way that she will understand. When it was time to wean from her binky we were very gentle about it and it took several tries. I am thinking this is similar in her mind to her precious binkies. This kid has been through so much trauma and scary stuff related to her medical condition, and the condition is lifelong. I just don't want to add any more trauma to her life. OTOH if it's time to say goodbye to the button, then it's time and I'm not going to let her keep it if she doesn't need it. HELP!
I am not a mom but I am a pediatric nurse so I am going to give my worth. Do what they say to do with pacifiers and take her to build a bear and have it sewn inside (after its cleaned or if its a mic button use a new one) that way she will have a celebration toy and tube with her. It is a part of her and its fear of the unknown. You did the best you could at explaining it not really knowing at the time what the outcome would be. Good Luck
What a beautifully written article! Way to learn from a mistake, correct it and use it to help others! I work at a children's hospital where 90% of our patients have a lifelong condition/disorder (mostly CP, spina bifida, seizure disorders). I will be printing this article out and sharing it with my coworkers. Thank you for sharing it.
worth. Do what they say to do with pacifiers and take her to build a bear and have it sewn inside (after its cleaned or if its a mic button use a new one) that way she will have a celebration toy and tube with her. It is a part of her and its fear of the unknown. You did the best you could at explaining it not really knowing at the time what the outcome would be. Good Luck
OCD_Mom
179 Posts
I am going to have to be your study/lab partner in class,
or just sit close by....