• Skip to primary navigation
  • Skip to main content
  • Skip to footer

Family Reflections

Deciding about Home Ventilation

  • Home
  • 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?
  • Characters
  • Glossary
  • About
  • Feedback
  • Español

Trach and Vent option for your child

Considering The OptionsTopic 1A

“Trach and Vent” option for your child

Parents may look at the “trach and vent” option differently. You may also hear the term “home vent” for a ventilator that can be used in your home.

You can listen to two different family experiences below.

Marta and Tomas

Tomas leaving for work. Marta staying home to care for Miguel and Sammy.

“When the doctors told us about the trach and vent option…”

+ Read Transcript

Scroll for full transcript

Marta: When the doctors told us about the trach and vent option for Miguel, we knew it was the best choice for us. We couldn’t just keep living at the hospital – that wasn’t going to work. Miguel was born premature and had already been in the hospital for months before he could even get his trach surgery.

Tomas: All we wanted to do was get him home so we could be together as a family. It was hard with one of us at the hospital and the other home with our 4-year-old Sammy. Marta and I hardly ever saw each other.

Marta: Yeah, and we didn’t feel like Miguel was making much progress in the hospital. For him to be the best he can be, he needed to be held in the love of his family.

Tomas: We knew it wouldn’t be easy, with everything we had to learn about, like how to take care of his tracheostomy, how to suction, how to work the pulse ox machines and the feeding pump and everything. It was basically like taking the whole hospital home with us. It was scary, but doable. We have a big family and some of them are able to help us with Miguel.

Marta: I’m happy we went for the trach and vent, because I can see my baby acting like a baby, and not using all of his energy just to breathe. You can tell that he’s so much happier now!

John

John looking at photo of Ruby.

“I know some parents choose the trach and vent option, but…”

+ Read Transcript

Scroll for full transcript

John: I know some parents choose the trach and vent option, but it just wasn’t right in our situation.

Ruby was born premature and her lungs were so weak. She spent her entire life on a ventilator in the hospital. We kept thinking she would get better, but she never seemed to. We were in the hospital for seven months so we’d had many ups and downs, lots of time to talk about what to do.

At one point the doctors brought up putting in a trach so that we could take Ruby home with a vent. Her mom and I were no longer together by that point, but we researched what we could about the trach and vent. We talked with some other parents with a child on home ventilation.

But, neither of us felt we could do it alone… you know, take care of Ruby with a vent and probably a feeding tube too. I didn’t have anyone to help out. My parents live across the country and I live in the middle of nowhere! I’m not even sure there are nurses that could come to my house since I’m pretty far out of town. And even if we did get a nurse, it wouldn’t be 24/7.

I knew that if I couldn’t completely care for Ruby, she would end up in some facility and I couldn’t let that happen to her after living in the hospital her whole life. And I saw Ruby, stuck in bed, always on the vent, never seeing the world outside of her hospital room. I just thought, “Is this really the life I want for her?”

Go to next topic ➜

Footer

Your feedback helps to improve this website.

Click here to give your feedback.

Text and Audio © 2019 Johns Hopkins University

Illustrations © 2019 Booster Shot Media, Inc.

Privacy Policy

Your feedback helps to improve this website.

Click here to give your feedback.

Text and Audio © 2019 Johns Hopkins University

Illustrations © 2019 Booster Shot Media, Inc.

Privacy Policy

  • Español

Your feedback helps to improve this website.

Click here to give your feedback.

Text and Audio © 2019 Johns Hopkins University

Illustrations © 2019 Booster Shot Media, Inc.

Privacy Policy

Más información sobre Devin...

Devin tiene 8 años y sufre de parálisis cerebral y escoliosis. Utiliza una silla de ruedas y un tubo de alimentación. Cuándo empezó a tener problemas para respirar, no todo el mundo estaba de acuerdo con la traqueostomía y el ventilador en casa. Pero su madre creía que era lo mejor para Devin. Su tía ayuda a cuidarlo en casa.

Más información sobre Devin...

Devin tiene 8 años y sufre de parálisis cerebral y escoliosis. Utiliza una silla de ruedas y un tubo de alimentación. Cuándo empezó a tener problemas para respirar, no todo el mundo estaba de acuerdo con la traqueostomía y el ventilador en casa. Pero su madre creía que era lo mejor para Devin. Su tía ayuda a cuidarlo en casa.

Más información sobre Vivian...

Vivian tiene 4 años y tuvo cirugía cardíaca cuando era bebé. Luego tuvo neumonía cuando tenía 2 años y no pudo salir del hospital sin una traqueostomía y un ventilador. Su mamá y su papá querían que estuviera en casa y aprendieron a cuidarla con su ventilador a domicilio.

Más información sobre Miguel...

Miguel nació prematuro con pulmones muy frágiles. Cuando tenía 6 meses, sus padres decidieron por una traqueostomía y un ventilador en casa para que pudiera salir del hospital lo más pronto posible. Ahora tiene 9 meses y vive con su madre, su padre y un hermano mayor muy activo.

Más información sobre Miguel...

Miguel nació prematuro con pulmones muy frágiles. Cuando tenía 6 meses, sus padres decidieron por una traqueostomía y un ventilador en casa para que pudiera salir del hospital lo más pronto posible. Ahora tiene 9 meses y vive con su madre, su padre y un hermano mayor muy activo.

Más información sobre Ruby...

Ruby nació prematura y sus pulmones no se desarrollaron por completo. Después de varios meses enferma en el hospital, sus padres decidieron que un ventilador en casa no era adecuado para Ruby y que no funcionaría para su familia. La desconectaron del ventilador del hospital y murió en los brazos de su padre.

Más información sobre Ruby...

Ruby nació prematura y sus pulmones no se desarrollaron por completo. Después de varios meses enferma en el hospital, sus padres decidieron que un ventilador en casa no era adecuado para Ruby y que no funcionaría para su familia. La desconectaron del ventilador del hospital y murió en los brazos de su padre.

Más información sobre Ashley...

Antes de que Ashley naciera sus padres sabían que ella tendría muchos problemas graves de salud, incluyendo problemas para respirar. Morgan y Matt recibieron opciones de su equipo médico. Sabían que la vida de Ashley sería corta, incluso con un ventilador. Eligieron llevarla a casa con hospicio. Ashley murió en casa junto a su familia cuando tenía 3 meses de edad.

Más información sobre Ashley...

Antes de que Ashley naciera sus padres sabían que ella tendría muchos problemas graves de salud, incluyendo problemas para respirar. Morgan y Matt recibieron opciones de su equipo médico. Sabían que la vida de Ashley sería corta, incluso con un ventilador. Eligieron llevarla a casa con hospicio. Ashley murió en casa junto a su familia cuando tenía 3 meses de edad.

Más información sobre Vivian...

Vivian tiene 4 años y tuvo cirugía cardíaca cuando era bebé. Luego tuvo neumonía cuando tenía 2 años y no pudo salir del hospital sin una traqueostomía y un ventilador. Su mamá y su papá querían que estuviera en casa y aprendieron a cuidarla con su ventilador a domicilio.

Más información sobre Chayton...

Chayton tiene 6 años y usa un tubo de alimentación y una silla de ruedas debido a debilidad muscular. Sus padres no querían que se sometiera a la cirugía para una traqueostomía. Ha podido usar BiPAP para ayudarlo a respirar y estar en casa con su madre, su padre y sus hermanos mayores.

Más información sobre Chayton...

Chayton tiene 6 años y usa un tubo de alimentación y una silla de ruedas debido a debilidad muscular. Sus padres no querían que se sometiera a la cirugía para una traqueostomía. Ha podido usar BiPAP para ayudarlo a respirar y estar en casa con su madre, su padre y sus hermanos mayores.

Traqueostomía

Un tubo que atraviesa la garganta y llega a las vías respiratorias. Un ventilador puede conectarse a una traqueostomía.

Ventilador

Una máquina que ayuda a una persona a respirar empujando el aire, y a veces oxígeno, a través de un tubo en la garganta. A veces esto se denomina “máquina de respiración”.

Cuidados paliativos

Los cuidados paliativos tienen como objetivo reducir el dolor o las molestias del niño. Los cuidados paliativos también ayudan a las familias a considerar qué es lo más importante para ellas. Los especialistas en cuidados paliativos proporcionan un nivel adicional de apoyo para los niños con enfermedades graves y sus familias.

BiPAP

Presión positiva de dos niveles en las vías respiratorias: Una máquina que ayuda a una persona a respirar empujando el aire, y a veces oxígeno, a través de una mascarilla. Las correas mantienen la mascarilla en su lugar sobre la cara.

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.