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

Throwing up, cramping, or bloating

Reasons

1. The feeding rate is too fast or this is too much food in the stomach.

  What to do:

  • Slow the rate or try less food. If this does not work, try holding the feeding for an hour and then give it slowly. If it keeps happening, talk to the dietitian about changing the speed of the flow.

2. Your child has a virus or too much air in the stomach.

  What to do:

  • Vent the stomach. See Chapter 3 on how to do this.

3. The tube may not be in the right spot.

  What to do:

  • Contact your child's doctor if the throwing up has not stopped. If your child is very sick, call right away. They may be very tired and have a fever if they are very sick.

4. Formula is too cold.

  What to do:

  • Make sure the formula is at room temperature before using.

5. Change in formula./p>

  What to do:

  • Contact your child's dietitian if your child's formula changed recently.

Runny poop

This is when there is more than 3 loose or watery poops a day. This is called diarrhea.

Reasons

1. Feeding rate is too fast.

  What to do:

  • Slow the rate or try less food. If this does not work, try holding the feeding for an hour and then give it slowly. If it keeps happening, talk to the dietitian about changing the speed of the flow.

2. Your child has a virus.

What to do:

  • Contact your doctor if the pooping does not stop.

3. Change in formula.

  What to do:

  • Contact your dietitian if their formula has recently changed.

Skin site red because of drainings

A little redness can be normal.

Reasons

1. It may be from damp skin because of the drainage.

What to do:

  • Clean the skin site more often with mild soap and water. Keep the site dry.
  • Put on a dry dressing if there is drainage.
  • Diaper rash creams, like those made with zinc oxide may be used around the tube.
  • Contact your child's doctor or nurse if the skin does not get better.

Skin site is red and itchy with tiny red bumps (rash)

Reasons

1. A skin site that is red and itchy with tiny red bumps (rash)This is often because of damp skin from drainage.

What to do:

  • Be sure skin is dry. If the rash does not go away, contact your child's doctor or nurse. A special medicine may be needed.

Coughing, choking, or trouble breathing during or right after a feeding

Reasons

1. Formula may be coming back up from the stomach into the throat.

What to do:

  • Slow down the rate of the feeding.
  • If the problem continues, contact your child's doctor or nurse.

Leaking at the skin site

Reasons

1. If the tube has a balloon, water could be leaking from the balloon.

  What to do:

  • If you have been taught, check the amount of water in the balloon. Add more water, if needed.

2. If the tube has a bumper, it may have slipped away from the stomach wall. The size of the stoma is larger than the tube.

What to do:

  • Gently pull back on the tube to be sure that the bumper is snug against the stomach wall. See Chapter 2 for more information. Secure the tube to help keep it from wiggling.
  • Contact your child's doctor or nurse if the skin is red, peeling, or you have other concerns about the size of the stoma.

Feeding does not run through the tube

Reasons

1. Tube is clamped.

  What to do:

  • Unclamp the tube.

2. Blockage due to food or medicine.

What to do - Follow these steps:

  1. Start at the top of the tube and squeeze by rolling the tube between your fingers to dislodge the blockage.
  2. Flush the tube with warm water using a push pull method. Take the plunger and push and pull it back and forth.
    Note: Do not use juice or soda to unclog the tube. This will lead to more clogging later.
  • If your child has a button type tube, there may be a clog in the extension set. Disconnect the extension set and flush it out over the sink.

How to keep the tube from clogging

  • After each feeding or medicine dose, always flush with 2-5 mL of water before clamping the tube.
  • Only use liquid medicine. If your pharmacist tells you, crush pills well and mix in water.
  • If formula seems too thick, thin it. Talk to the dietitian to find out how to do it.

Contact your child's doctor or nurse if you are not able to unclog the tube.

Extra tissue growth

This could be granulation issue.

Reasons

1. Moisture at site, unstable tube, tube that does not fit well.

  What to do:

  • This is common. It does not mean there is an infection.
  • See Chapter 2 on how to keep tube clean and secure.
  • Contact your child's doctor or nurse to have this treated.
  • See Granulation tissue section in this chapter.

Bleeding around tube or stoma

Reasons

1. Tube leaning or pulling.

  What to do:

  • Secure the tube. See Chapter 2 on how to secure the tube.

2. You may see bloody drainage if there is granulation tissue.

What to do:

  • Look to see if there is granulation tissue. Contact your child's doctor or nurse if you see this tissue. If your child has been treated for this tissue and you still have medicine, you only need to let the doctor or nurse know if the medicine is not working.

3. Bleeding may happen after a tube change.

  What to do:

  • Do not be alarmed at a little bleeding. Contact your child's doctor or nurse if the bleeding does not stop.

Infected site

cellulitis or infectionReasons

1. Infection can be caused by many things.

What to do:

  • Contact your child's doctor or nurse if you see these signs:

    -Large amounts of redness that is spreading
    -Fever
    -Swelling
    -Thick and creamy drainage that is not formula
    -Drainage with odor
    -Skin feels hard and warm

Broken parts on tube

Reasons

1. Normal wear and tear or defect in tube.

  What to do:

  • Contact your child's nurse or home supply company.
  • You can watch the video on how to change the adapter on our video page.

2. Examples include defective tube or broken port adapter.

What to do:

  • If the port is broken on an extension set, change the extension set.
  • If you don't have a spare adapter, contact your child's nurse.

Feeding pump not working

Reasons

1. There are many reasons a feeding pump may not work.

What to do:

  • Check the manual or contact the home care supply company. Sometimes the pump manuals can be found online. If you are unable to fix the feeding pump, you could try feeding through a syringe. See Chapter 3.

Tube or button comes out

Reasons

1.The tube has been pulled out.

2. The balloon is broken or does not have enough water.

What to do:

  • Try to stay calm. This is not an emergency. The tube needs to be put back in within 1 to 2 hours.

    -Put a washcloth or gauze over the opening
    -If the tube has never been changed, do not put anything into the tract. Bring your child to the Emergency Room.
  • If you have been taught to change the tube, then replace the tube.

    -If the tube that comes out is broken or dirty, use the spare tube
    -If the tube that came out is not broken and it is not dirty, you can put it back in.