ICU PUSHES FOR END-OF-LIFE, BUT WE WANT INTENSIVE CARE AT HOME FOR OUR VENTILATOR-DEPENDENT SON!

https://intensivecareathome.com/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 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?

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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?

Hi Patrik,

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?

From Tom

Hi Tom,

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...

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