Chapter 6: Resources

Parent to parent

General advice

Relax, and don't give up. Ask other parents.

Join social media groups, or follow parent blogs for children who have feeding tubes.

Use a baby monitor to listen for your child.

Feeding

"As a nurse, I always warned parents that stomach contents might come out the tube, especially during bolus feedings."

Be prepared. If you are feeding or venting with a syringe or if your child is crying or coughing, tummy juice, and formula will come back up into the syringe. The juices may look curdled. Don't worry. This is normal. It does not mean that anything is wrong. Just calm your child and re-feed. It can be hard if your child won't calm down.

Sometimes it is hard to work around your child's feeding plan. This is especially true when other children need to be taken to and from school or when you need to go to a doctor's appointment. It is okay to give the feeding for a shorter time or change the feeding plan for the day. If this happens a lot, talk to your dietitian about changing the plan.

Talk to the nurse or dietitian about how to understand your child's hunger signals, if they can eat some things by mouth.

"I found a device that makes it easier to open formula cans. It was in the soup aisle, and is intended for opening cans that have pull-tabs. I tried it and it worked like a charm. No more sore thumbs!"

Feeding pumps

"I love the small pump. Since my child is on continuous feeds, the pump's small size is ideal for me. We can go about our day while they eat."

For kids who need feeding pumps, there are several different kinds. Many times, you will get the pump that your equipment company uses the most. If you have problems with it, like lots of beeping, call the home care or clinic nurse for help. You may not have to stay with the same brand of pump or even the same home care supply company.

Before making changes, always check with your insurance company.

An interactive site that walks you through using the Kangaroo pump.

Extension sets

Don't over-twist the extension set when connecting it to the button.

Keep tubing from getting wrapped around an active child.

  • Tuck the tubing under clothes. Use a onesie, t-shirt, or other belly band.
  • Run tubing through clothes and out the leg. It's harder for the child to reach, and the tubing moves with the child.

Tips for cleaning the extension set:

  • After rinsing, run the partly closed clamp up and down the tube. Then rinse again. You can also roll the tube between your fingers to loosen the formula stuck in the tube. Start with cold water so that the formula does not stick as much.
  • Your home care company may have a long, thin brush that you can order to help with cleaning the tube.

Changing the tube

If your child has already had their first tube change at the clinic, you can carry an emergency kit. The emergency kit will be helpful if your child's tube comes out when you may least expect it.

The kit should have a spare tube, sterile water, a syringe for the balloon and some lubricating gel. Keep an extra syringe, gauze, water and hand sanitizer in your kit.

Traveling

Take all your child's supplies with you. It is helpful to have extra supplies just in case you need them.

  • If you are flying, put all supplies in your carry-on luggage.
  • You can use a lamp pole to hang the feeding bag.
  • Check with your insurance company on coverage for healthcare when you leave town.
  • Ask your home care supplier if they can ship formula to where you are going.

Family support

There are many organizations that may help you. See below.

Daniel M. Soref Family Resource Center at Children's Wisconsin

May also help network you with other families who have feeding tubes.

(414) 266-3169
Children's Wisconsin webpage

Parent to Parent of Wisconsin

Parent to Parent of Wisconsin offers parent support to parents of children with special needs. Matches are made with trained parents who know about the feelings and realities that come with having a child with special needs.

(888) 266-0028

The Children and Youth with Special Health Care Needs Program

This program can help you by suggesting resources you may not know about. They may also have videos and books about tube feeding and oral eating problems. These regional centers are helpful with consulting, referrals and follow up services.

Financial

If you need help for medical expenses, talk to your social worker or someone in the Children and Youth with Special Health Care Needs Program. They can help you learn how to get help to pay for what your child needs. Ask about some of these resources:

Supplemental Security Income (SSI)

This program offers an insurance card and a monthly payment. Families who have a low income may be able to get it. Apply through your local Social Security Office or by calling.

(800) 772-1213

Badger Care Plus

Badger Care is a program that provides insurance for families in Wisconsin who do not have it.

Medical Assistance Spend Down –

Local County Health and Human Services Offices can help you to look at your medical costs and how it affects income. This may help your child get Badger Care Plus.

Katie Beckett Program –

Katie Beckett Program is for children with long-term disabilities or complex medical needs and who are living at home. They help families get an insurance card. Parent income does not matter.

Children's Community Options Program (CCOP) –

These funds are for getting the things that are listed in the child and family-centered individual service plan (ISP). Your county will help develop the ISP if your child qualifies for this program.

Children's Long Term Support Program (CLTS) –

CLTS program uses Medicaid funds for children who have major challenges and need support to stay in their home or community.

 

For more information or to apply for Katie Beckett, Medicaid, Children's Community Options, or Children's Long Term Support programs visit
http://www.compasswisconsin.org/. You can get help from Compass Wisconsin if you live in these counties:

Adams Columbia
Dane Green
Jackson Jefferson
Kenosha La Crosse
Lafayette Marquette
Monroe Ozaukee
Racine Rock
Walworth Washington
Waukesha

Families in other counties should contact their county's social or human services agency: https://www.dhs.wisconsin.gov/clts/contact.htm

Nutrition resources

Insurance may or may not pay for formula. Start with the resources below to get help.

  • Your insurance company – call to see if formula is covered.
  • The formula company – some formula companies have programs to help you with formula when insurance denies it.
  • WIC – you may be able to get help from WIC. It may include formula benefits.

Women, Infants, and Children (WIC) Program –

WIC is a special nutrition program. It is meant to get good food to pregnant, breastfeeding, postpartum women, and their kids.

Katy's Kloset –

This program lends medical equipment for free. They often have tube feeding supplies and formula that have been donated by those who no longer need it. Katy's Kloset is a service of Team Up! With Families

School and therapy

Birth to Three Program –

This is a program for infants and toddlers who may have a delay. For more information, go to their website.

Individual Educational Plan (IEP) –

Local school districts will write an IEP for children have delays. Ask your neighborhood school's principal to tell you about this.

CHW Schoolroom –

If your child is admitted to Children's Wisconsin, school is offered in the classroom or at the bedside.

A social worker –

After your child gets their feeding tube, a social worker can help your school get ready to care for your child at school. Ask your nurse to speak to a social worker.

Transportation

Transportation or mileage reimbursement –

You may be able to get money to help pay for driving your child to medical appointments. If you do not have a car, you can get help with a ride to appointments. Your social worker at the clinic or hospital can help you with this.

Disabled Parking Permit –

The Disabled Parking Identification Card can help parents of a child with a disability. To get a card fill out a form and have your doctor sign it. A form is available.

Internet resources

Families often use internet to find help. Below are some trusted resources to help support you.

**These web sites are meant to help you care for your child. They do not take the place of medical care.
Talk with your healthcare provider for diagnosis, treatment, and follow-up.
Websites were checked when this Care Notebook was published in 2020, but may change.