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Family Reflections

Deciding about Home Ventilation

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    • 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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Expressing your preferences and concerns

Talking With DoctorsTopic 2B

Expressing your preferences and concerns

You might have a different point-of-view than your medical team on some issues. It can be challenging, but it’s important to tell them your preferences.

You can listen to two different family experiences below.

Kiana

Kiana and Devin watching TV. Kiana's aunt cooking in the kitchen.

“At the end of the day, my son is my son, and I get to choose…”

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Kiana: At the end of the day, my son is my son and I get to choose. I see Devin for who he really is. I didn’t care about his developmental problems. If a trach was going to help him, it was going to help him whether or not he has limited abilities. He is happy. He doesn’t know any different. The trach helps him.

You know what one doctor told me? She said that a trach wouldn’t be a good idea for Devin because his brain is too severely injured. She said she didn’t think he had any quality of life. I couldn’t believe she said that, she had only known Devin for a week! And Devin’s dad agreed with her. That was so hard to take. I mean, I am with Devin every day, I take care of him, I am the one who knows Devin! His impairment is hard but he doesn’t know any different. I guess I get where they were coming from, but I knew Devin had so much more life to live. And, he has a good life, even with his problems.

That doctor didn’t see him at home, she didn’t know. His dad didn’t know him too well either, he only saw what he couldn’t do. I think he just couldn’t take it with all of Devin’s new medical issues and the equipment; he really didn’t want to go forward with the trach but said it was my decision.

Morgan & Matt

Photo of Matt and Morgan with Ashley in bed.

“My only regret is that I didn’t learn to advocate for Ashley sooner…”

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Morgan: My only regret is that I didn’t learn to advocate for Ashley sooner. To me, it seemed hard for the doctors to talk about Ashley dying. They could easily describe doing more tests or procedures or medicines, but they just seemed uncomfortable talking about what would happen if we didn’t do those things. We had never been through anything like this before, we needed help understanding all the different options.

Matt: For me, it was hard when we could not get clear information about what Ashley’s life would look like without machines. We knew that she would be born with serious health problems, that her time with us would be short. We knew some families might have had an abortion, but we told the doctors that was not an option for us. After that, it seemed like they sort of assumed that we wanted, I don’t know, like heroic measures for Ashley.

Morgan: The best thing was that Matt and I were on the same page. We did not want Ashley to suffer. We wanted to bring her here, to our home, with our family, to love her and spoil her.

Matt: We talked with some other parents, and they helped us come up with some ideas and questions for the doctors. Once we got hooked up with hospice, we finally understood more about what might happen for Ashley after she was born. About how we could give her the best life possible.

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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.