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Duchenne Muscular Dystrophy at 36, Ventilated & Tracheostomy Stuck in a Nursing Home, Can I Go Home?
Duchenne Muscular Dystrophy at 36, Ventilated & Tracheostomy Stuck in a Nursing Home, Can I Go Home?
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Hi, it’s Patrik Hutzel from intensivecareathome.com where we provide tailor-made solutions for long-term ventilated adults and children with tracheostomies at home and where we also provide tailor-made solutions for hospitals and intensive care units at home whilst providing quality care for long-term ventilated adults and children with tracheostomies at home, otherwise medically complex clients, adults and children at home which includes Home BIPAP (Bilevel Positive Airway Pressure), Home CPAP (Continuous Positive Airway Pressure) ventilation, home tracheostomy care for adults and children that are not ventilated, Home TPN (Total Parenteral Nutrition), and home IV potassium infusions, home IV magnesium infusions and IV antibiotics. We also provide port management, central line management, PICC (Peripherally Inserted Central Catheter) line management as well as Hickman’s line management at home, and we also provide palliative care.
We also have sent our critical care nurses into the home for the Western Sydney Local Area Health District for emergency department bypass services for the in-touch program there.
So. today I have an email from Nick who says,
“Hi Patrik,
I have a ventilator and tracheostomy that I use around the clock. I have been in a nursing home for two years trying to get back home to be with my family. I’m 36. I have a sound mind and even a degree. So, I’m aware of everything.
I have Duchenne muscular dystrophy. I always lived at home until I was 34 and now, I’m two hours away from any family. I really want to change that and get my life back on track. I used to work from home and contribute to society and I know going home would save a lot of money.
I have tried many avenues and talked to many agencies and programs but keep hitting a roadblock. Every time I get my hopes up, I get denied or told another lie. I’ve been on waiting lists for months and after that, I get told the program I applied to cannot help me even though I tell them all my conditions and medical necessities upfront, they contact me later saying I need more help than the program can provide.
A ventilator and tracheostomy should not be a life sentence to be served in a nursing home. We have landed on the moon, for goodness sakes. Surely, there is a solution in the year 2024. I just know there is. Can Intensive Care at Home help?
Please contact me if you receive this message.
I truly hope to get some good news.
From, Nick.”
Well, Nick, I am very sorry to hear about your situation and it sounds to me like even though you’re not specifically mentioning that in your email, it sounds to me like you have received the ventilator and the tracheostomy, were in the hospital, no one could take you home. That’s how you ended up in a nursing home, it’s probably a very bad place. I’m surprised a nursing home is happy to look after you, but it sounds like you’re in a very negative situation here.
Of course, whoever you spoke to the state programs and agencies you spoke to, they don’t want to know about your situation because it is a very unique and specialized skill to take someone home on a ventilator with a tracheostomy. That is a very unique and special skill that very few, if any, services have. But you have come to the right place here at intensivecareathome.com because that’s pretty much all we do. We are highly specialized on looking after adults and children at home on ventilation with tracheostomy.
Continue reading at: https://intensivecareathome.com/duchenne-muscular-dystrophy-at-36-ventilated-tracheostomy-stuck-in-a-nursing-home-can-i-go-home/
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