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?