Chapter 5: Preparing for home

Guide to concerns

When and how to call the team managing your child's feeding tube, our After Visit Summary (AVS) will tell you when and how to contact the nurse or healthcare provider.

Care team members

Remember, you are an important member of your child's team. Be ready to tell the team about how your child has been doing.

Clinic assistant

• Measures your child's height and weight.
• Checks blood pressure, heart rate, breathing rate, and temperature, if needed.

Nurse clinician

• Reviews and update your child's medical history since the last visit.
• Reviews your child's medicines and prescriptions.
• Reviews your child's daily schedule.
• Discusses activity and therapy.
• Answers questions and discuss concerns.
• Helps order supplies needed for home.

Dietitian

• Reviews your child's growth and diet.
• Makes suggestions for changes to the feeding plan, if needed.

Healthcare provider

They will examine your child and talk about your child's plan of care. This includes:

• Doctor
• Physician assistant
• Nurse practitioner
• Fellow
• Resident or intern

Contacting your care team

There are a couple ways to contact your child's care team members.

Phone

Keep a complete list of all phone numbers you may need before you leave the hospital. You may want to add these numbers to your cell phone.

• Number to call for doctor or nurse:
  o   during regular business hours
  o   when you have an urgent concern
• To make or change an appointment: Central Scheduling (414) 607-5280
• Home supply company also called DME (Durable Medical Equipment)
• Pharmacy

MyChart

One of the best ways to contact your child's care team for non-urgent concerns is through MyChart. You can:

• send emails and pictures
• check lab results
• make appointments
• ask questions

It can take 24 to 48 hours to get a response. Use the app to help keep track of your child's information. Download app >>

Clinic visits

After going home, your child will need to come back to the gastroenterology (GI) or Surgery clinic for follow-up visits.

What to expect at your child’s regular clinic visits. We will:

• review your child's health and plan for care.
• check the fit of the tube as your child grows.
• review medicines and dosages.
• do lab tests or x-rays, if needed.
• check for any problems.
• teach you new things you need to know.

Items to bring to clinic

• A list of your child's medicines.
• Supplies your child may need while you are in the clinic or at the hospital:
  o   Extension set
  o   Syringe
  o   Feeding supplies
  o   Water, formula, or medicines
  o   Spare dressing or gauze
• Write down your questions and concerns. This will help you to remember so you can
  discuss them with your care team.

First tube change

After your child's tube is placed, it will need to be changed in the clinic for the first time. This usually happens 6 to 12 weeks after the tube is put in. It is important that the tube does not get changed until the tract is fully healed.

If the tube falls out before the first tube change, cover the stoma with gauze or a washcloth and take your child to the Emergency Room. Do not try to put the tube back into the stoma unless your child's nurse or doctor tells you to do this. You will not have a spare tube at home until after the first tube change.

Sometimes your child may need medicine to go to sleep when they have their tube changed. Your child's doctor or nurse will tell you if this needs to happen. To watch how to change a tube, visit our video page >>

Once the first scheduled tube change is done, you can change the tube at home. We will teach you how to change the tube when you come to the clinic.

Common problems

It is normal to have the site crust and drain while the tract is healing. It is also common to see a small amount of redness which may come and go. Sometimes when your child gets sick, their tube site can look sick. This includes:

• A small amount of redness
• Extra drainage

Follow these steps to help keep problems from happening

• Keep the site clean and dry
• Keep tube secure
• Flush the tube when needed

How to deal with tube and skin concerns

Problems can happen with even the best of care. Call your child's doctor or nurse if the tips below do not help.

Granulation tissue

Granulation tissue is extra growth of healing skin. This is a normal response of the body. It is very common. It does not mean there is an infection. It is pink or red, moist tissue that is seen where the tube comes out of the skin. This tissue is like the tissue inside the cheek. It may cause a yellow-green thick sticky drainage or small amount of bleeding. Most often, it is not painful.

Talk to your child's nurse or doctor if you think you see granulation tissue. It is not an emergency, but you should make them aware of it if you do not know what to do.

Ways to prevent granulation tissue

• Secure the tube. See Chapter 2 >>
• Keep site clean and dry
• Have your child's nurse or doctor make sure the fit of the tube is good

Treatment for granulation tissue

A steroid cream for skin is often prescribed by the doctor. If the stoma site is newer than 30 days, other treatments may be advised. If the tissue has grown very big or causes other problems, the tissue may be removed with silver nitrate in Clinic.

How to use steroid cream

• Use a cotton-tipped swab to put a thin layer of cream only on the raised granulation tissue.
• Apply the cream 2 to 3 times each day until there is no more raised tissue.
• Do not treat with the steroid cream longer than two weeks. After that, if it is not better, call the nurse or doctor.
• If there is still some tissue after not treating for one week, you might need another treatment of the cream. You can apply the cream for another two weeks.

Silver nitrate sticks

This is most often done in the clinic. The nurse will use the sticks to shrink the tissue. Sometimes the medicine gets onto the skin near the tube. This may stain the skin a dark color. The stain will go away after a few days. Follow the directions the nurse give you after silver nitrate is used on the tissue. If you notice blisters or peeling skin, call your nurse or doctor.

Emergencies

Things that need medical attention right away

With any of these concerns, stop the feeding. Take your child to the Emergency Room.

• Small bowel obstruction

Signs of this may include:

– green fluid coming up into your child's tube or throwing up out of mouth.
– swelling or pain in the belly.
– a change in your child's normal activity. Child seems weak or more tired.

• Tube not in the right place

Sometimes when you change the tube, it can go in the wrong place. Signs include:

– Runny poop
– Gagging or throwing up
– Belly pain
– Change in normal activity
– Weakness or more tired
– Fever

These signs most often happen during or after feedings after the tube has been changed.

• Large amount of bright red blood in the tube

Guide to concerns

• Back to Chapter 4
• Next to Chapter 6