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Family Reflections

Deciding about Home Ventilation

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  • Topics
    • 1: Considering the Options
    • 2: Talking with your Doctors
    • 3: Life at Home
    • 4: Relationships
    • 5: Your Child’s Experience
    • 6: If Your Child’s Life is Short
    • How can you apply this to your child?
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Questions

Suggested Questions

Here is a list of suggested questions that you might like to ask your child’s medical team.

The questions are based on what the families who have made decisions about trachs and vents wanted to know.

Click here to download or print these questions.


Treatment options:

  • What are all of the different treatment options for my child’s breathing problems?
  • What will my child’s medical care look like after a trach/ vent?
  • How long will my child need the trach?
  • If our child does not get a trach/ vent, what will happen?
  • What if we aren’t sure we can take care of our child on a trach/ vent?
  • What should my family do if we don’t agree about the trach/ vent decision?

Talking with the medical team:

  • Can we have a meeting with all of our child’s medical team to talk about making the decision about trach/ vent?
  • We hear different information from different doctors and nurses about the trach/ vent: is everyone in agreement about what to do for my child?
  • Can we speak with the palliative care team to help us think about what is right for our family?

Life at home:

  • What kind of equipment might we need at home?
  • How much home nursing might my child receive?
  • What will we do if a home nurse is scheduled, but does not show up?
  • Will one of us need to leave our job to care for our child with a trach/ vent?
  • How will we be taught to take care of our child? Can other family members be taught too?
  • Will we be able to leave the house and go places with a trach/vent?
  • How can we know if our house and car are appropriate for a trach/vent?
  • What additional expenses could we encounter if insurance does not cover everything?
  • What if we are worried we cannot afford the care our child would need with a trach/vent?

Relationships:

  • What if we don’t have many people in the area to help us?
  • How might home nursing affect my family and our privacy?
  • How might a trach/ vent affect my other children?
  • How might a trach/ vent affect my relationships with other people in my family?
  • How might a trach/ vent affect my relationships with our friends and community?

My Child’s Experience:

  • Will the trach/ vent be comfortable for my child?
  • How will my child move around with the trach/ vent?
  • How might my child communicate with a trach/ vent?
  • How might a trach and vent affect my child’s development in the next year? How about in the next 5 years? How about longer than that?
  • If my child has a trach, and we cannot take care of him/her, what options will we have?

If Life is Short:

  • Will a trach and vent give our child more quality time with our family?
  • If we don’t think the trach/ vent is right for our child, how can we keep him/ her comfortable?
  • If we don’t think the trach/vent is right for our child, what happens next?
  • Will there always be an option to remove the trach and vent, if we think it is no longer helping our child?
  • I am afraid to think about my child dying. Can I talk with someone about this?

Click here to download or print these questions.

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BiPAP

Bilevel Positive Airway Pressure: A machine that helps a person breathe by pushing air, and sometimes oxygen, through a mask. Straps keep the mask in place on the face.

Palliative Care

Palliative care aims to reduce a child’s pain or discomfort. Palliative care also helps families consider what is most important to them. Palliative care specialists provide an extra layer of support for children with serious illness and their families.

More about Chayton...

Chayton is 6 years old and uses a feeding tube and wheelchair because of muscle weakness. His parents did not want him to go through the surgery for a trach. He has been able to use BiPAP to help him breathe at home with his Mom, Dad, and older brothers.

More about Chayton...

Chayton is 6 years old and uses a feeding tube and wheelchair because of muscle weakness. His parents did not want him to go through the surgery for a trach. He has been able to use BiPAP to help him breathe at home with his Mom, Dad, and older brothers.

More about Vivian...

Vivian is 4 years old, and had heart surgery as a baby. Then she got pneumonia when she was 2 years old, and couldn’t leave the hospital without a trach and ventilator. Her Mom and Dad wanted her home, and learned to take care of her home vent.

More about Vivian...

Vivian is 4 years old, and had heart surgery as a baby. Then she got pneumonia when she was 2 years old, and couldn’t leave the hospital without a trach and ventilator. Her Mom and Dad wanted her home, and learned to take care of her home vent.

More about Ashley...

Ashley’s parents knew before she was born that she would have many serious health problems, including trouble breathing. Morgan and Matt were given options by their medical team. They knew Ashley’s life would be short, even with a ventilator. They chose to take her home with hospice care. Ashley died at home with her family when she was 3 months old.

More about Ashley...

Ashley’s parents knew before she was born that she would have many serious health problems, including trouble breathing. Morgan and Matt were given options by their medical team. They knew Ashley’s life would be short, even with a ventilator. They chose to take her home with hospice care. Ashley died at home with her family when she was 3 months old.

More about Devin...

Devin is 8 years old and has cerebral palsy and scoliosis. He uses a wheelchair and a feeding tube. When he started to have trouble breathing, not everyone agreed about doing the trach and home ventilator. But his mom believed it was the best thing for Devin. Her aunt helps her care for him at home.

More about Devin...

Devin is 8 years old and has cerebral palsy and scoliosis. He uses a wheelchair and a feeding tube. When he started to have trouble breathing, not everyone agreed about doing the trach and home ventilator. But his mom believed it was the best thing for Devin. Her aunt helps her care for him at home.

More about Ruby...

Ruby was born prematurely and her lungs didn’t fully develop. After being sick for months in the hospital, her parents decided that a home ventilator was not right for Ruby and would not work for their family. She was removed from the hospital ventilator and she died in her father’s arms.

More about Miguel...

Miguel was born prematurely with very fragile lungs. When he was 6 months old his parents chose to for him to have a trach and home vent so he could leave the hospital sooner. He is 9 months old now, and lives with his Mom, Dad, and very active older brother.

More about Miguel...

Miguel was born prematurely with very fragile lungs. When he was 6 months old his parents chose to for him to have a trach and home vent so he could leave the hospital sooner. He is 9 months old now, and lives with his Mom, Dad, and very active older brother.

More about Ruby...

Ruby was born prematurely and her lungs didn’t fully develop. After being sick for months in the hospital, her parents decided that a home ventilator was not right for Ruby and would not work for their family. She was removed from the hospital ventilator and she died in her father’s arms.

Ventilator (or "Vent")

A machine that helps a person breathe by pushing air, and sometimes oxygen, through a tube in the throat. This is sometimes called a “breathing machine.”

Tracheostomy (or "Trach")

A tube that goes through the throat and into the airway. A ventilator can be hooked up to a tracheostomy.