My 15 Year Old Daughter has been in PICU Since 10/2019 on Ventilator &Tracheostomy. I Want Her Home!

https://intensivecareathome.com/my-15-year-old-daughter-has-been-in-picu-since-october-last-year-she-cant-come-off-the-ventilator-tracheostomy-i-want-her-home-please-help/

My 15 year old daughter has been in PICU since October last year. She can’t come off the ventilator & tracheostomy. I want her home, please help!

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Today I want to answer and other questions from one of our readers, Katie.

My 15 year old daughter has been in PICU since October last year. She can’t come off the ventilator & tracheostomy. I want her home, please help!

So Katie sent an email and she writes in,

Hi Patrik,

my 15 year old daughter, Jessie has been in the pediatric intensive care unit since October, 2019 due to a seizure emergency colon surgery, pneumonia, blood clots and eventual tracheostomy.

We are trying to get her home but she will need to be on a ventilator 24 hours a day, seven days a week. She also has tracheostomy and bronchial malacia.

I would like to know what areas in Australia do you provide services in? We are in Sydney.

Also, what types of insurance do you accept or who is paying for the service,

because we can’t afford to pay for it privately.

The hospital doesn’t seem to be of much help for us with who’s going to pay for the service. When we’re at home Jessie suffers from a rare disease called mucopolysaccharidosis. This is a disease that is characterised by the body’s inability to make a specific enzyme. It is a progressive disease that currently has no cure. The doctors just feel that the Tracheomalacia in her airway is the direct consequence of her having the mucopolysaccharidos.

Jessie was also intubated in October and didn’t receive her tracheostomy until November. Please help us. We can’t stay in the pediatric ICU forever. Many thanks from Katie.

Hi Katie,

thank you Katie for writing in and for sharing your daughter’s situation.

So number one, we are providing services in Sydney, there is no issue around location. We are providing services outside of the big metropolitan areas, Sydney and Melbourne in country Victoria for example, or country in new South Wales.

And we can also provide services or we are providing in Sydney. So metropolitan areas obviously are much easier for us than the rural or country areas.

So there’s no issue there.

In terms of your daughter being in the pediatric ICU since October last year, there is no issue from our end taking her home as long as she’s not on inotropes or vasopressors. You haven’t mentioned any of that.

And I think it’s very unlikely that she is still on inotropes or vasopressors. So going home with a tracheostomy and ventilation even though she needs to be ventilated 24 hours a day, that’s bread and butter for us.

Why is it bread and butter for us? Well, we are all intensive care nurses with a minimum of two years ICU experience. As a matter of fac, our average ICU nurse has more than eight to 10 years ICU experience and they, you know, over 70% of our staff, have completed an ICU or a pediatric ICU critical care certificate.

So we employ highly skilled and highly experienced people, with decades of intensive care as well as pediatric intensive care experience...

Continue reading at: https://intensivecareathome.com/my-15-year-old-daughter-has-been-in-picu-since-october-last-year-she-cant-come-off-the-ventilator-tracheostomy-i-want-her-home-please-help/