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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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Other options for your child

Considering The OptionsTopic 1B

Other options for your child

There are many reasons why parents might look at options other than trach and vent before making a decision.

You can listen to two different family experiences below.

Marta and Tomas

Family having dinner together. Miguel has a feeding tube and is connected to a breathing machine.

“For Miguel, the doctors basically gave us three options…”

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Tomas: For Miguel, the doctors basically gave us three options. He could get a tracheostomy, or we could keep him in the hospital until he got better… and though we didn’t want to hear about it, we also could have taken him off the vent. That meant he would die. Thinking about those things, it got really dark. I didn’t want to consider our life without Miguel in it.

Marta: So really for us, we had two options: But, if we kept him in the hospital, he might even need even an additional year there before he could come home. And with the trach they told us we could bring him home and learn to take care of him. We also had to think about what all this was doing to our other son Sammy. We were at the hospital all the time with Miguel, but Sammy needed us too. We needed to all be home together.

Tomas: It was by the grace of God that Miguel kept fighting like he did. We believe he’s here for a reason. That God’s will is whatever it’s supposed to be. We left it up to Him, and He wanted Miguel to stay with us.

Marta: Tomas’ parents are in Mexico, so they have not been able to meet Miguel yet. The day before his trach surgery, we had Miguel baptized to give Tomas’ parents peace of mind. It helped us to find some peace, too.

John

Photo of John holding Ruby in the hospital.

“I feel like I really explored the different options for Ruby…”

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John: I feel like I really explored the different options for Ruby. Thinking about what a trach and vent would mean for her, you know, it just didn’t feel right. Sure, the trach would have let her move around a little more than the breathing tube in her mouth, but she would still always be attached to all those machines. And she looked miserable more and more of the time. That was my main concern – no matter what, Ruby should not suffer.

Once we made the decision not to do the trach and vent, the ICU doctors talked about what it might look like to let Ruby go. The palliative care team helped us think through different options for making Ruby’s last days as good as possible. We talked about trying to get her home, even for a few hours, with hospice to help us out. In the end we decided not to do that. But we took pictures and made hand molds and all of her nurses came around to hold her. Because the nurses knew her so well, you know? They loved her too.

Ruby and I both knew when it was time…that day, she just looked tired. The nurses got her all dressed up and then helped to get her into my arms. Ruby’s mom was there too. The doctors were there to give Ruby medicine in case she looked uncomfortable– that was good because I was scared she was going to struggle. But it was actually really peaceful. Her last moments were in my arms, and I can’t imagine a better way if she had to leave this world. I knew when we decided against a trach and home vent that Ruby would die, and that decision will always weigh heavy on my heart, but I know I made the right decision for my baby girl.

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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.