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Family Reflections

Deciding about Home Ventilation

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Balancing work, time, and money

Life At Home TopicTopic 3B

Balancing work, time, and money

Changes in your child’s medical care make new demands on your work, time and money.

You can listen to two different family experiences below.

Catherine

Catherine up late at night reviewing bills and finding online support groups. Nurse caring for Vivian who is connected to a breathing machine.

“Having a child on a vent is expensive! Our state insurance covers most of our costs…”

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Catherine: Having a child on a vent is expensive! Our state insurance covers most of our costs, but I wish someone had helped us apply for that much earlier. Ken and I both used to work, but my company didn’t understand the amount of attention my daughter needs. I missed a lot of work for Vivian’s medical appointments or because nurses didn’t show up. My boss threatened to fire me, so Ken and I decided I should quit and stay home with Vivian. Ken now works two jobs.

And although the insurance really helps, they won’t pay for supplies once we’ve run out. For instance, they only pay for so many trach ties a month—if we run out because the ties get wet or dirty or whatever, then we have to buy extras and pay for them ourselves. Running the vent full-time drives up our electricity bill too, and so does having nurses in our home.

We are lucky to have financial support from family and from Ken’s work. His colleagues started an online fundraiser for Vivian that raised a lot of money for us. The outpouring of generosity from them was amazing. It also helps to be plugged-in to a few social media groups. This one group for moms of children with trachs has been a great for finding inexpensive medical supplies. I don’t know how we’d do it otherwise.

Mary

Mary taking kids out to look at horses on a farm. Chayton is wearing the BiPaP and is in his wheelchair.

“When Chayton is sick, I can’t go to work, sometimes for a week…”

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Mary: When Chayton is sick I can’t go to work, sometimes for a week, because he needs more breathing treatments when he’s sick.

My husband, Joseph is a mechanic and is always working because farm equipment is always breaking down. He comes home late a lot. That makes it hard on me, being the primary person taking care of Chayton.

I don’t know what I would do without his cousin, Kaitlyn. She is always here. She in the 11th grade and comes over after school to help with Chayton so I can go work at the hair salon. She also watches my other two boys. My boys are really good with Chayton, and they help too. Kaitlin loves Chayton – we pay her a little something for her help when we can.

Even with Kaitlyn and the nurses, it’s still hard. It is gradually getting worse for him and he is sick more and more often. But we are fortunate that the Indian Health Services pays for his medicines and equipment. And the doctors on the reservation are really nice. They call the lung doctor at the children’s hospital if Chayton is getting worse. We try to take care of him at home because when he goes to the hospital, I miss work and I don’t get paid when I am not working. It’s not easy but what else can I do? Chayton is my son and I do whatever I have to for him.

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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.