My 4 Year Old Son's in PICU with Cerebral Palsy & BIPAP, Can INTENSIVE CARE AT HOME Keep Him Home?

https://intensivecareathome.com/my-4-year-old-sons-in-picu-with-cerebral-palsy-bipap-can-intensive-care-at-home-keep-him-home/

My 4 Year Old Son's in PICU with Cerebral Palsy & BIPAP, Can INTENSIVE CARE AT HOME Keep Him 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. And where we also provide tailor-made solutions for hospitals and intensive care units. Whilst it’s providing quality services for our clients, hospitals and medically-complex patients at home including Home TPN (Total Parenteral Nutrition), and IV fluids, IV antibiotics and even now IV potassium infusions.

Now in today’s blog, I do want to give again a real case study. We are currently having an inquiry from a family, who has their four-year old son with cerebral palsy in intensive care and pediatric intensive care. Now, we have a number of clients at home that we have looked after with cerebral palsy for many years. It’s a very similar situation. They are at home needing deep suctioning. They’re not ventilated necessarily, some of them are, but some of them aren’t. And as long as they get the deep suctioning, it generally speaking, keeps the airway patent, keeps the airway free. Keeps them free of chest infections/ pneumonia.

Now, for deep suctioning, you need a critical care nurse to do that. It’s not even a skill of a registered nurse, of a general registered nurse without ICU or pediatric ICU or ED experience. And this is what’s happening to this little boy. He keeps bouncing back between home, and intensive care because they don’t have intensive care nurses at home. With our other cerebral palsy clients, we can predictably keep them home because they get all the therapy and treatment at home that they need in order to stay at home and not get readmitted to intensive care. If they get the deep suctioning, if they get the BiPAP, if they get the CPAP, sometimes they need a tracheostomy. And the moral of the story here really is that you can’t have a medically complex child at home without intensive care nurses, expecting they never go back to ICU. And now the intensive care is also talking about palliative care.

Now, that is very sad when you think about it, this is a four-year old child, with cerebral palsy, we have clients with cerebral palsy that live a long life or can live a long life, and they deserve a life. And now without proper funding in this instance, it’s NDIS (National Disability Insurance Scheme) funding that’s needed. This child is probably going to die and is not going to have the quality of life they deserve. Having not a good shot at life is not what we need in this society in 2023 we need to do better than that. There’s no question about that.

Now, also, the NDIS is trying to have “cheap options” by sending support workers to basically intensive care patients. And that in my mind is a crime and I’m not going to border that down because children and adults have died in the community because of the NDIS trying to provide cheap services with support workers with all due respect to support workers. Why is this child in ICU, if a support worker could manage him? There’s a contradiction big time and the NDIS needs to get their act together and provide the right level of care that these, sometimes adults, in this instance, it’s a child needs and not provide a cheap service that kills people. Because like I’ve said on this blog over and over again, there are at least three adults and children NDIS participants that have died in the last few years that needed intensive care nurses.

Continuation...
https://intensivecareathome.com/my-4-year-old-sons-in-picu-with-cerebral-palsy-bipap-can-intensive-care-at-home-keep-him-home/