Can You Advocate for My Child to Get 24/7 ICU at Home Because She’s on Ventilator with Tracheostomy?

https://intensivecareathome.com/can-you-advocate-for-my-daughter-to-get-24-7-icu-at-home-because-shes-on-ventilation-with-tracheostomy/

Can You Advocate for My Child to Get 24/7 ICU at Home Because She’s on Ventilator with Tracheostomy?

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Hi it’s Patrik Hutzel from INTENSIVE CARE AT HOME where we provide tailor made solutions for long-term ventilated Adults& Children with Tracheostomies by improving their Quality of life and where we also provide tailor made solutions to hospitals and Intensive Care Units to save money and resources, whilst providing Quality Care!

In the last blog I talked about

The surprising truth about Australian hospitals — we don’t need so many

You can check out last week’s blog here.

In today’s blog I want to answer a question from one of our readers.

Can you advocate for my daughter to get 24/7 ICU at home because she’s on ventilation with tracheostomy

So in this short video, I want to answer a question from one of our readers Denise.

So Denise writes, I’m currently receiving services from a company, and I’m not going to mention the company in Sydney, Australia. They provide registered nurses in the home for my daughter Stacy for 16 hours daily. My daughter Stacy is ventilated with a tracheostomy and she’ needs 24 hours a day intensive care nursing because that’s what she needs and would get if she was in ICU.

I’m looking because I would like to receive coverage for 24 hours daily. I’m at work during the day and then I have to get up at night to provide care for my daughter Stacy. I have to suction her, I have to change her brief and have to turn her so she’s not getting pressure sources, etc.

According to the company that I’m using, there is a shortage of nurses who want to work in home care because the hospitals and nursing homes pay more. At least that was, that is what the company’s saying. They’re having a hard time recruiting nurses. There are several of my shifts that are open even though she has to been approved for 16 hours daily. I have seen on your website that you provide care up to 24 hours a day with intensive care nurses.

And I have also seen that you’ve advocated for other clients to get funding. I would be really interested to find out more about how you do that and what are the chances that you could do the same for us. My daughter at the moment is funded through the NDIS, which is a government funded program.

There is no way that I can personally afford to pay privately for these services. As you might imagine, our lives have been pretty tough. There have been times that I couldn’t work because I had to care for my daughter. If I was independently wealthy, this wouldn’t be a problem. Too bad. There is not a wealthy benefactor somewhere who is empathetic to our plight and could help.

My daughter’s care has become much more involved and complex since January. This last hospitalisation she suffered a stroke under the eyes of the hospital staff, but fortunately, God is great and she’s recovering due to his grace. The experience is emotionally very draining. She is my only daughter and I have dedicated my life to caring for her.

Most people are born with trisomy 18 pass away at a very young age, but this one she’s a miracle girl and we are blessed for each day that we have her. Thank you for taking the time to respond...

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