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.
In last week’s blog, I talked about,
You can check out last week’s blog by clicking on the link below this video:
In today’s blog post, I want to answer a question from one of our clients and the question today is
The ICU Doctor Is Pushing Us for End-of-Life for Our Son But We Want Him Home? Can Intensive Care at Home Help Us to Bring our Ventilator-Dependent Son Home?
The precipitating event for my son to go on aspiration pneumonia was in the context of a rare brain disease, Rasmussen’s encephalitis. His course over the past 11 months has been to stay in ICU and he’s still there at present. This has been complicated by a hospital or by a ventilator-associated pneumonia and severe malnutrition. The most probable cause of failure to wean my son off the ventilator is chronic muscle wasting throughout his body with some lung tissue scarring due to multiple pneumonia events.
The Rasmussen’s encephalitis has been treated and not progressed per neurologist, but has left my son Jeffrey with a significant left hemisphere defect. My son can often tolerate up to 24 hours of spontaneous breathing with pressure support of 12, PEEP of 5, FiO2 of 28%, but then can only manage about 60 minutes of tracheostomy with a tracheostomy collar.
Many of the experienced ICU doctors and ICU nurses we’ve seen believe he’s capable of weaning, but the current ICU doctor believes he will be ventilator-dependent for the rest of his life and is pushing us for either end-of-life or to stay in ICU for longer. But we want him home.
I hope this helps to look at our son’s situation.
We want him home with your service. What are the next steps? How can you help us in this situation?
Thank you so much for detailing your son’s situation. Well, it sounds to me like your son is a very good candidate to go home, especially after 11 months of intensive care. That’s terrible. And many of our clients that we look after at home have been in that predicament of having been in ICU for months on end.
And whether he can be weaned or not, I couldn’t tell you at the moment. I mean, we would need to talk to the doctors, but in any case, after 11 months of ICU, it’s time to get out there. Sometimes people can’t be weaned in ICU because they’re simply depressed. They’re simply not having any quality of life. They’re stuck in an ICU room, ICU bed space, ICU cubicle, whatever you want to call it, often with no natural daylight, often with no day and night rhythm or with no natural day and night rhythm because often the lights are on and off all day and all night in ICU, because there’s people everywhere. It’s loud. It’s noisy. It’s very difficult to get in a normal day and night rhythm.
And unlike at home, where your son could, for example, go on the balcony, he could go on the veranda, whatever your setup is, can go and get some fresh air, can have a routine that is conducive to your son’s lifestyle, at the moment. His routine is dependent on the ICU’s schedule and ICU schedules are very busy. So at home, it is much more tailor-made to your son’s wishes and to your son’s situation, and not dependent on ICU schedules.
So I’m also not surprised that ICU is trying to push your son towards end-of-life because they need the bed. And again, we are creating a win-win situation for everyone. So we’re creating a win for your son. We are creating a win for you as a family, because you can finally stop visiting your son in ICU, or I mean, I don’t know. You haven’t mentioned that maybe you can’t visit him at all at the moment because of COVID. So the win is for your son, the win is also for the ICU to free up that bed, and the win is also for the funding body to save half of the cost of the intensive care bed.
And we can set up home care. We’d get all the equipment ready to take your son home. We’ll hire a team that will look after your son, and then we can look at the next steps, getting your son home, and try and wean him off the ventilator at home. So those are the next steps.
Also, given that your son is so young, with 30 years of age, ICU is definitely not the right place for him. He needs to live his own life at home with his family and not in an intensive care unit.
Thanks, Tom. I hope that helps. Wishing you all the best for now. We’ll talk soon. Take care.
Now, if you have a loved one in intensive care and you want to go home with our service intensive care at home and if you want to find out how to get funding for our service and how it all works, please contact us on one of the numbers on the top of our website, or send me an email to [email protected] That’s Patrik, just with a K at the end.
Please also have a look at our case studies because there we highlight more about what we can do for clients, how clients can live at home with ventilation and tracheostomies and you can look at our case studies as well at our service section.
And if you are at home already and you need support for your critically ill loved one at home, and you have insufficient support or insufficient funding, please contact us as well. We can help you with all of that.
And if you are an intensive care nurse or a pediatric intensive care nurse with a minimum of two years, ICU or pediatric ICU experience, and you ideally have a critical care certificate, please contact us as well. Check out our career section on our website. We are currently hiring ICU and pediatric ICU nurses for clients in the Melbourne metropolitan area, Northern suburbs, Mornington Peninsula, Frankston area, South Gippsland, as well as Wollongong in New South Wales.
So we are also an NDIS, TAC (Victoria) and DVA (Department of Veteran affairs) approved community service provider in Australia. Also have a look at our range of full service provisions.
Also, we have been part of the Royal Melbourne health accelerator program in the past for innovative healthcare companies.
Thank you for watching this video and thank you for tuning into this week’s blog.
This is Patrik from intensive care at home, and I’ll see you again next week in another update.