Mom has MND&is Ventilator dependent in ICU.Can you Help Bring Her Home with Intensive Care at Home?

1 year ago
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https://intensivecareathome.com/my-mom-has-motor-neurone-disease-and-cant-come-off-the-ventilator-in-icu-can-you-help-me-bring-her-home-with-your-services-at-intensive-care-at-home/

My Mom has Motor Neurone Disease and Can’t Come off the Ventilator in ICU. Can you Help Me Bring Her Home with your Services Intensive Care at Home?

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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 and where we also provide tailor-made solutions for hospitals and Intensive Care Units whilst providing quality services for long-term ventilated patients and medically complex patients at home, including home TPN.

In today’s video blog, I want to answer a question from one of our readers and Tracy writes,

Hi Patrik,

I came across your information while looking for a way to care for my mom at home. I found your information online, but I’ve also heard about your service from other MND (motor neurone disease) clients, because my mother has actually motor neurone disease. She is currently in ICU at the hospital, and she had a respiratory issue a few weeks ago and she needed to be intubated. And two and a half weeks later, had a tracheostomy performed.

She’s currently still in ICU where they’re trying to wean her out of ventilation dependency. She’s had multiple infections throughout her ICU stay, and because of this, the weaning process of the ventilator has not been as desired. The doctors are stating that they may not be able to wean her off the ventilator, and they’re suggesting that she might be in ICU for a long time to come. And if she can’t be weaned off the ventilator, then they think they want to “pull the plug” and end her life.

We would like to care for her at home instead. And I came across your information, and I have heard about your service from other MND (motor neurone disease) patients. My mother currently has no insurance or no support to go home. And I would like to know if your services are covered by the NDIS (National Disability Insurance Scheme). We are in Sydney, Australia. Because of her MND (motor neurone disease), her pulmonologist and respiratory physician predicts she might need a ventilator machine for the rest of her life, plus, the tracheostomy. Please let me know if your services are covered by the NDIS and if not, what kind of costs it involves to see how we can care for my mother at home?

Regards,

Tracy

Hi Tracy,

Thank you so much for detailing your mom’s situation. And this is a situation we have seen over and over again, especially with MND or motor neurone disease. We have some clients at home that are looked after by us 24 hours a day covered by the NDIS (National Disability Insurance Scheme) that have motor neurone disease, and that will help your mom to go home on a ventilator with the tracheostomy. There’s no need for you to buy into the negativity from the intensive care team that they want to “pull the plug” and end your mom’s life. There is definitely a way forward for you.

The first step really is to look at your mom’s intake to the NDIS. And then we can help you advocate for the 24-hour nursing care. Many of our other clients have achieved that with the NDIS in similar situations. And once the funding has been approved, then we can start getting ready for home care, hire an ICU nursing team so she can actually leave intensive care and get the same level of care she gets in ICU at home. It’ll be so much nicer for you. You don’t have to go to ICU every single day. You can be with your mom at home with our nursing team.

Continue reading at: https://intensivecareathome.com/my-mom-has-motor-neurone-disease-and-cant-come-off-the-ventilator-in-icu-can-you-help-me-bring-her-home-with-your-services-at-intensive-care-at-home/

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