I can’t predict whether your child’s g-tube feedings will be embraced at school or whether they will cause fear and trembling. Policies that govern school districts and even schools vary from one place to another. And the attitudes of individuals are, well, individual.
What can you do to tip the scale towards creating a relaxed, supportive feeding experience for your child and their school staff? Here are some ideas that have worked for us…
1) Plan to meet with the team to talk about tube feedings before your child ever arrives at school. This is your chance to model attitude and set the tone. If you view the feeding tube as “just another route to the stomach,” that will go far to ease tension. At the same time, you want to reinforce the importance of good hygiene, safe food handling, and sensitivity to your child’s digestive issues.
This meeting gives you a chance to reinforce your child's individual strengths and needs. Is she quite healthy, benefiting more from the social environment of the cafeteria than from a germ-controlled room (if such a thing existed)? Are positional or rate issues important for preventing vomiting? Are there steps in the routine he can carry out independently, along with plans for expanding those steps?
Repeat these trainings every year. There is a good chance your school team will have new members, and that these folks may have never been around g-tubes before. Even if they have, your child’s needs and your attitude may be different from their previous exposure. Or even from last year.
--share your child’s story about tube feeding. Knowing history helps put today into perspective. Seeing the personal side of a “medical procedure” (oooh, that sends shivers up my spine) helps make it less daunting. It’s also a vivid reminder that your child is a person, first and foremost; the “medical” aspect of their care is simply how their care is delivered.
--demonstrate with sample equipment and let EVERYONE touch it (including all the aides; maybe especially all the aides). I have a kit I bring with me to each year’s staff training meeting. We go over the contents together and I encourage everyone there to try out the equipment. This isn’t training on the specifics of using the equipment, but sharing general information to help folks become familiar and relaxed. This is just a teaching kit; it is NOT the same supply kit we send to school for back-up or button failure.
|A “sample stomach.” The small hole cut in the lid of the can represents the stoma. |
Of course the depth is all off, but it helps the staff see how
the button and the body work together.
Daily items that I bring along:
|A feeding pump. I want people to hear the alarm so they can identify it. |
I want them to hold it so they are less intimidated by "equipment."
|A feeding bag. I point out the weak areas to help them troubleshoot alarms. |
Of course, now that the manufacturer has adopted a new style,
I have new weaknesses to learn about!
--encourage questions. Answer them honestly. Again, you are modeling attitude. You are also providing information that will help staff answer student questions.
[Warning: soapbox preaching ahead] This personal meeting is such a critical part of your child’s care. Interestingly enough, when I Googled “g-tube at school” the articles that came up stressed the medical precision of feedings. They emphasized the involvement of the child’s doctor and the school nurse and following written orders and sanitary conditions…and completely omitted the personal aspect of the child and family. Not one of the professional articles on Page One of the search results mentioned asking parents to participate in training the school team, unless they hid this suggestion in fine print in the appendix. Do you find that as curious as I do? Obviously, safety and medical protocol are important. But so is the personhood of the child. Feeding nourishes more than just the body…
2) Send a complete set of back-up supplies. Knowing there is a back-up plan—and adequate supplies to carry it out—helps people relax. If the nurse and teacher know they have spares in case of a clog or leak or earthquake, they (and you!) will be much less stressed over the “what ifs.” It also reduces the number of times you have to rush supplies to school. Be sure to send replacement extras for those that get used during the school year. We make sure there are plenty of spare extension tubes, bags, syringes, and frozen meals. We also have a Foley feeding tube for emergency replacement of the feeding button. The school staff can't insert it, but having it on hand saves precious minutes if I have to be called to replace the button.
3) Be available to walk the staff through problems, whether in person or over the phone. Just as you would never leave your child stranded, the staff should not be stranded either. It’s good to encourage them to solve problems on their own, because we all gain confidence when we come up with solutions. Just be sure to leave out criticism if their solutions are different from yours, so long as they are safe, workable ones.
4) Minimize steps for the school staff. They will appreciate you showing your support by doing what you can at home to keep feeding simple. We send bags pre-filled, tubing pre-primed, pump pre-set. We make lunch the last meal of her bag's 24-hour lifespan, so there is no need to rinse it out to reuse later. I’d rather see the staff working on meaningful goals with my daughter than busying themselves preparing or cleaning up after her lunch. Your child’s feeding routine may require that his staff do more than ours, but whatever you can do to minimize their efforts with feeding will go far to demonstrate your support.
5) Check back periodically to make sure things are going well. You don’t have to be a pest. So long as things appear from your end to be going fairly well, you can just ask every few months whether there are any questions or concerns. A simple email or note at the bottom of your child’s daily communication sheet will do.
Obviously, if you notice any glaring problems, such as half of each day’s lunch coming back home with your child, then do address your concerns immediately. There are many issues that could be standing in the way, and some are fairly easily fixed. Others may take some sleuthing. But it’s a team thing, and you are the expert on your child’s team…
Do you have any other suggestions for helping g-tube feedings at school go smoothly?
Other g-tube posts that you might enjoy reading: