Child does not want g-tube removed

Published

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!

Up Vote Up Vote ×
Specializes in NICU, PICU, PCVICU and peds oncology.

From one parent of a medically complex child to another, I think you made a mistake by turning that GT button into something special and not "telling it like it is". The button is/was a tool for helping her grow but it's been turned into something much more than that and she's having a hard time letting it go. It might have been easier when this stage was reached if you'd made HER special and not the button, know what I mean? You're going to have to turn the situation around and help her understand the temporary nature of the button, that she no longer needs it because SHE has grown up and become such a great eater. Appeal to her need to conform. She's at the age now where she recognizes that other kids don't have them and that she's different. You can call her stoma scar an extra belly button (it served a similar purpose, after all) and help her develop an explanation for it that she can tell her friends. Turn the situation into being about her and not the button. I wouldn't recommend giving her a new one to have and hold... it'll add to her confusion. Let her choose the day that the button is removed for good, but don't make it open ended. "You can pick a day between now and Saturday for the button to come out." Let her decide when to throw it out. "You can keep it for a few days, do you want to put it in a box and keep it until next Tuesday?"

I see similar situations arise with children diagnosed with cancer. Their parents, with only the best of intentions, make a big deal about chemo, bone marrow aspiration, LPs and so on, giving the child rewards for "allowing" something they really have no choice about. It creates such problems later on, the children become accustomed to being given rewards for simply doing what needs to be done and then they don't know how to cope when they're not "special" any more. The best advice I ever received when my son was small was to treat him like my other children, not to treat him differently because I'd make him "different". When he started his chemo at the age of 26 1/2 months, it was just part of his life. The radiation treatments, the bone scans, the biopsies, the surgeries, the five years of sometimes daily hospital visits, they were not choices. His choices were which leg he got his shot in and whether we did it before breakfast or after. Did he want chocolate milk or cranberry juice to swallow his pills with. And he was never rewarded for doing what had to be done. We rewarded him for things that any of our children would have been rewarded for. It made life so much simpler not to have to argue and cajole him.

It's not too late to turn things around with your daughter. It won't be easy but the button is a good place to start.

Up Vote Up Vote ×

Thanks for your answers! I guess because this is new territory (no one ever expects to be the parent of a child with medical issues) I did make some mistakes. The thing is, once we found out what her dx was at age 3 (yes it took a long time) we met lots of other people, kids and adults alike, who had to survive solely on elemental formula and maybe a few foods if they were lucky. We thought she may have the tube for life, or at least for a long time. As it turns out we were able to find a limited but balanced diet for her, teach her to eat, and she is thriving now.

I have raised both of my kids to feel special and valued for who they are as unique people, but the thing she gets the most attention for that others don't get attention for is her tube. I have to tell her teachers, swim coach, and anyone who might take care of her. I see your point now. I wish I had not done that. I wish they had provided some kind of counseling for parents of kids with medical issues so we would know better how to handle these situations.

I have tried to treat her as a normal child. I am not overprotective of the button, knowing that if she can figure out how to do the slip n slide without hurting it, great! She takes swim lessons, goes to school, and is very active. Even learned to ride her bike at a young age. I expect her to have good table manners and eat her meal just as I expect that of my other child. I ignore choking because I know she will recover and be fine. When she she was younger and vomited, I was very matter of fact about it and she learned to get her own cup to vomit into when she needed to and would just hand it to me and keep playing.

Anyway, I will definitely change my tune. It will not be her choice if it comes out or not. That will be the doctor's choice, of course. I will let her choose if she wants me to remove it at the doctor's office, if she wants the doctor to do it. Maybe what sticker she wants to put over the bandage and things like that. Maybe she's just afraid of being normal. I have always told her she was special for the reasons she is-- sings cute songs, gives great hugs, tells funny stories and so on. But like I said she does get a LOT of attention for the button.

My heart goes out to you having a child who had to face chemo. Thanks again for listening.

Up Vote Up Vote ×
Specializes in NICU, PICU, PCVICU and peds oncology.

Life would definitely be easier if there were no children born with challenges. (I'd be out of a job, but I'd survive!) It would also be infinitely easier if they came with an instruction book or a road map, but they don't. We're all swimming in uncharted waters and sometimes the best support comes from those swimming alongside of you. All we can really do is the best job we know how. You've done a lot more "right" with your daughter than not. You'll all get through this and she'll be the stronger for it. So will you. (And you're going to be a good nurse because of your insights.)

Up Vote Up Vote ×
Specializes in NICU, Infection Control.

What would you (and jan, too) think about getting an inexpensive doll and sticking the tube in it's abdomen? She can get some role playing out of her system that way, and maybe deal w/some "issues".

Also, what about "celebrating" g-tube graduation??

Up Vote Up Vote ×
What would you (and jan, too) think about getting an inexpensive doll and sticking the tube in it's abdomen? She can get some role playing out of her system that way, and maybe deal w/some "issues".

Also, what about "celebrating" g-tube graduation??

Her baby doll has a button, too. She's had her button since age 2 and I don't think baby doll will graduate from her tube. I would LOVE to have a graduation party for my daughter, but my older one (who already craves attention) would feel pretty bummed out about this.

Well today after school I talked to the kids and asked them things about people they know who have "aids" like glasses and canes, and asked if those things make them special. They both told me, without any input from me, that those people were special because of xyz qualities about them. That it's what kind of person you are, and the things you do that make you special. Not what you wear or have on your body. If so and so takes off her glasses (a girl who is the only one in her class that has them) will she still be special? If so and so (a kid with a leg brace in her class) takes it off, is he still special? (My daughter said, "No he would still be naughty") :chuckle

I think she got it. I so appreciate the help on this. The tube has been part of her self identity but we need to start pointing out the rest of her identity because there's so many great things about her. This is a huge lesson for my future patients, whether I do pediatrics or adults. I don't know what area I will work in yet. My dad-- his whole identity is as a sick person with all his health issues. I get the feeling he enjoys the attention he gets at the doctor. He refuses to make positive changes to improve his health and maybe inside he thinks that if he does, he will no longer know who he is, he's been sick for so long.

Very very important lesson. Thanks so much! I'll post back to let you know if she ends up getting the go-ahead for tube removal.

Up Vote Up Vote ×
Specializes in PICU/NICU.

What about having your GI talk to her..... I'm sure they already have, but.... my son, who only has severe allergies can hear it till I'm blue in the face about how he has to take his meds......... but- when the pulmonologist tells him, he really seems to listen. When he complains about taking a breathing treatment, I just say " I guess I'll have to call Dr. SoNSo and tell him you don't want to" boy does his tune change! A little fear of disappointmet isn't always bad.

Up Vote Up Vote ×
Specializes in PICU/NICU.
From one parent of a medically complex child to another, I think you made a mistake by turning that GT button into something special and not "telling it like it is". The button is/was a tool for helping her grow but it's been turned into something much more than that and she's having a hard time letting it go. It might have been easier when this stage was reached if you'd made HER special and not the button, know what I mean? You're going to have to turn the situation around and help her understand the temporary nature of the button, that she no longer needs it because SHE has grown up and become such a great eater. Appeal to her need to conform. She's at the age now where she recognizes that other kids don't have them and that she's different. You can call her stoma scar an extra belly button (it served a similar purpose, after all) and help her develop an explanation for it that she can tell her friends. Turn the situation into being about her and not the button. I wouldn't recommend giving her a new one to have and hold... it'll add to her confusion. Let her choose the day that the button is removed for good, but don't make it open ended. "You can pick a day between now and Saturday for the button to come out." Let her decide when to throw it out. "You can keep it for a few days, do you want to put it in a box and keep it until next Tuesday?"

I see similar situations arise with children diagnoses with cancer. Their parents, with only the best of intentions, make a big deal about chemo, bone marrow aspiration, LPs and so on, giving the child rewards for "allowing" something they really have no choice about. It creates such problems later on, the children become accustomed to being given rewards for simply doing what needs to be done and then they don't know who to cope when they're not "special" any more. The best advice I ever received when my son was small was to treat him like my other children, not to treat him differently because I'd make him "different". When he started his chemo at the age of 26 1/2 months, it was just part of his life. The radiation treatments, the bone scans, the biopsies, the surgeries, the five years of sometimes daily hospital visits, they were not choices. His choices were which leg he got his shot in and whether we did it before breakfast or after. Did he want chocolate milk or cranberry juice to swallow his pills with. And he was never rewarded for doing what had to be done. We rewarded him for things that any of our children would have been rewarded for. It made life so much simpler not to have to argue and cajole him.

It's not too late to turn things around with your daughter. It won't be easy but the button is a good place to start.

Beautifly written, Jan

Up Vote Up Vote ×

Thanks again for the informative replies to my earlier post. :) I just wanted to update that today was the GI appt. She had gained 1.5 pounds on their scale, which was pretty good, but the GI felt we should keep it in through flu season just in case. I have to say I agree. In the meantime I'm working to emotionally detach my daughter from her tube so it's no longer part of her identity. Of course she will always have her condition, and the tube for at least a little while longer, but I want her to realize how wonderful she is, tube or not. I realize my mistake and will pass on this wisdom as a nurse and a mother to others in a similar situation.

Up Vote Up Vote ×

I'm jumping here (lurker student) but for my son when his tube was removed we threw a party 'Goodbye G-Tube.' We made it a big deal at a local pizza party place and all. Granted my son's G-tube was his enemy of sorts but he also relied on it and it took him several months to adjust to not having his extra belly button. The day that made us realize things were nearly normal was the day he slid down the slide on his tummy for the first time. ;) This is all a learning curve for all parents and you did what was best for your family situation. None of us are the same...Good luck in school as well.

Up Vote Up Vote ×

I just wrote an article and it was published by Complex Child on-line magazine about the lesson I learned here. :-) Just wanted to share.

BTW my dd has had a great weight-gain month . . . fingers crossed but not holding my breath if you KWIM.

http://articles.complexchild.com/Oct2009/00161.html

Up Vote Up Vote ×
Specializes in NICU, PICU, PCVICU and peds oncology.

That was a great article! You're going to blow them away in nursing school. And your girls are lucky to have a great mom.

Up Vote Up Vote ×
+ Add a Comment