I can no longer take care of my son at home if he gets a tracheostomy and ventilator! Help!

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I can no longer take care of my son at home if he gets a tracheostomy and ventilator! Help!

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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 tracheostomy. And where we also provide tailor-made solutions at home for clients, adults, and children, on non-invasive ventilations, such as BIPAP or CPAP and we also provide home TPN, also known as IV or intravenous nutrition. TPN stands for Total Parenteral Nutrition, which includes central line, PICC (peripherally inserted central catheter) line, Hickman’s line management at home as well.

We also look after clients at home that are not necessarily ventilated or have a tracheostomy but that are medically complex and still need an ICU nurse, 24 hours a day, in order to keep them out of ICU consistently and predictably. But bread and butter for us is mainly ventilation and tracheostomy, one or the other, or combined.

Now today, I want to answer a question from a reader who says, “My 21-year-old son has a disability. Unfortunately, he ended up in ICU with a severe pneumonia. The ICU wants to do a tracheostomy. I’m concerned that I will be unable to look after him at home if he ends up with a tracheostomy and a ventilator permanently.” And that is from Sarah.

Sarah, I believe I can shed some light on your concern here. I don’t know enough about your son’s situation at the moment, but I have worked in intensive care for over 20 years before I started Intensive Care at Home.

Look, the tracheostomy may be avoidable, may not be avoidable. Again, I don’t have enough information, but let’s just say it’s not avoidable and your son needs a tracheostomy. Let’s just, take the worst-case scenario here that your son cannot come off the ventilator and needs the tracheostomy in the long run. Even if he can come off the ventilator and he “only needs” the tracheostomy, yes, you’re right. You probably can’t be looking after him again, but that’s where we come in.

With Intensive Care at Home, anything is possible at home and your son can be looked after at home with intensive care nurses, just like he’s looked after with intensive care nurses in ICU with the tracheostomy and the ventilator. We basically bring the ICU into the home in order to facilitate quality of life because there is no quality of life in intensive care. So, that’s it in a nutshell, really.

So, your concern is correct that, if your son needs a tracheostomy and/or ventilator permanently, you won’t be able to look after it because it’s such a highly specialized skill. And if people go home with ventilation and tracheostomy and they’re not looked after by ICU nurses, people die because medical emergencies, ventilation care, and tracheostomy cannot be managed by non-intensive care nurses. Can’t even be managed by general registered nurses because they don’t have the specific ICU training and ICU exposure that is needed.

So, that is also evidence-based. So, on our website at intensivecareathome.com, we have a section where it says, “Mechanical Home Ventilation Guidelines”. Now, those mechanical home ventilation guidelines are evidence-based. What that means is, Intensive Care at Home has been around for over 20 years now in countries such as Germany, Australia, Switzerland, Austria, France, and the only way to get long-term ventilated patients home with the tracheostomy is with intensive care nurses, 24 hours a day. And those intensive care nurses need to have a minimum of two years ICU experience.

Continue reading at: https://intensivecareathome.com/i-can-no-longer-take-care-of-my-son-at-home-if-he-gets-a-tracheostomy-and-ventilator-help/