PLEASE HELP US TO BRING OUR 18-YEAR OLD DAUGHTER WITH CEREBRAL PALSY HOME ON A VENTILATOR FROM ICU?

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CAN YOUR SERVICES AT INTENSIVE CARE AT HOME HELP US TO BRING OUR 18-YEAR OLD DAUGHTER WITH CEREBRAL PALSY ON A VENTILATOR FROM ICU TO 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

Can Your Services at Intensive Care at Home Help Us to Bring Our 18-year old Daughter with Cerebral Palsy on a Ventilator from ICU to Home?

Hi Patrik,

Please give me some input as to whether or not I am providing realistic care and have the proper thinking process for my loving and dear 18-year old cerebral palsy daughter, Maria. For the last year in 2020, Maria had more and more chest infections at home. I was looking after her, but I realized something was wrong with her breathing.

She had low oxygen levels and she had more and more chest infections eventually, she got pneumonia by the end of last year and she ended up in ICU where she was fighting infection and pneumonia. And we were then advised earlier this year that she needed a tracheostomy and she was placed on a ventilator.

Presently, she’s still in ICU and although they did try and wean her off the ventilator, staff in ICU are very concerned that her cerebral palsy prevents her from being successful in being weaned off the ventilator. I was seeking to have her reevaluated by an outside doctor, but that hasn’t happened yet.

We are in Sydney, Australia, and my daughter who is alert and is now also starting slowly to eat food, even though she’s ventilated with a tracheostomy, is very scared because even though she likes the food, she doesn’t want to aspirate and the doctors stop her from doing that. Maria keeps asking to have the tracheostomy and ventilator removed, which I don’t think is realistic, and the doctors also don’t think it’s realistic either.

However, the ICU at the moment has no plan for her care except maintenance. My concern is that she has excessive mucus and sputum, and all they do is, appear to solve it with suctioning. Can something else be done for this problem? How can you help with Intensive Care at Home? And can you wean her at home? Please share any knowledge and information you can have because we definitely want to take Maria home. We can’t be in ICU for much longer, especially now with COVID.

Please help.

From Joe

Hi Joe,

Thank you so much for sending through your question, Joe. I hope I can help you and I can shed a lot of light on that. So first of all, your daughter needs to leave intensive care as quickly as possible, and that can be done with Intensive Care at Home. And the funding should come through the NDIS especially you are in Sydney, Australia. There is definitely funding now for intensive home care, for 24-hour nursing care to get patients out of intensive care, especially if they have a ventilator and a tracheostomy. So that is the first thing you need to know.

Number two, you don’t want your daughter in ICU, especially with COVID at the moment. It’s just simply too dangerous for her to catch COVID as well in there. Number three, I’m not too surprised of what I’m seeing, because we have a number of patients at home that we are looking after with cerebral palsy and whilst none of them has a tracheostomy, most of them are ventilated on BiPAP ventilation without a tracheostomy, or they have BiPAP and a cough assist machine as well...

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