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How INTENSIVE CARE AT HOME Provides Care to a Client with Cerebral Palsy, BIPAP
(Bilevel Positive Airway Pressure) and Seizures!

If you want to know how Intensive Care at Home is managing a client at home with cerebral palsy on BIPAP, stay tuned. I’ve got news for you.

My name is Patrik Hutzel from intensivecareathome.com and one of the questions we’re getting quite frequently is, “How do you manage client at home with cerebral palsy and BIPAP dependency?”

So, I actually want to read out a shift report from one of our nurses who’s working with one of our cerebral palsy clients who’s got intermittent but regular seizures and is BIPAP dependent.

So, let’s just read out the shift report.

“Increase production and viscosity of secretions suctioning every 45 minutes.” And I just need to say that when we talk about suctioning for cerebral palsy, it’s very often deep suctioning. So, what that means is it’s not good enough just to use the suction catheter and suction in the mouth, whilst that’s part of it, you might have to go down deeper, you might have to go into the lungs and that can only be done by a critical care nurse either through mouth or through the nose. In many situations, that also requires a nasopharyngeal airway that needs to be inserted into the nose. Sometimes it might also require Guedel airway inserted into the mouth to be able to perform the deep suctioning. But with the deep suctioning, that’s prevention for pneumonia. If you’re not suctioning these secretions for someone that has an inhibited cough, that’s a recipe for disaster and it’s a recipe for pneumonia to happen.

So, then the report continues, “The client remains on nebulizers.” Once again, it’s also the skill of a critical care nurse to understand when to initiate a nebulizer, whether that’s a saline nebulizer, whether that’s Ventolin or salbutamol nebulizer or an Atrovent nebulizer or any other nebulizer for that matter. You need to know when to initiate. You need to have the skill of a critical care nurse to auscultate to the lungs with the stethoscope, check oxygen saturation, check breathing patterns of clients, check tidal volumes. When patients are on BIPAP ventilation, you need to make a proper clinical assessment to determine the right steps.

So, then the report continues, “The client appears more tired than usual between 5 p.m. and 6:30 p.m. We went for the walking routine, but 5 minutes into the walking routine, the client was displaying pre-seizure activity.” Again, this is where the skill of a critical care nurse is coming in, knowing when to stop because the client is displaying pre-seizure activity. They were going out in the community, this is another thing that I keep saying here at intensivecareathome.com, that all of our clients have community access, and they keep going out every day, as long as they’re well enough to go out, they have community access every day.

So, then the report from our nurse continues, “Initially little “drop seizures”, but it progressed to myoclonic seizure (repetitive right arm extension, bilateral eye movement, and head jerks). We got back into the car and the client is saturated to 45%, and she was ashen and cyanotic.

I’ve given 1.5 mg midazolam intranasally, whilst I also prepared oxygen. I had a support worker with me, and the support worker was able to prepare the oxygen. 10 liters of oxygen administered via face mask with requirements decreasing over a 5-minute period, postictal 10 minutes later with occasional desaturations but returned to baseline 15 minutes later. Bowels not open, abdomen slightly distended. Stage 1 pressure sore on the sacrum remains, skin breakdown in right axilla improving. Went for a walk from 19:15 to 20:40 with no problems.”

Whilst some of what I read out might sound dramatic, and if you are having a family member at home with cerebral palsy who displays such symptoms, and you don’t have a critical care nurse, I can only imagine what that looks like.

I remember years ago, when we first started in the community, we had an inquiry from a client where I knew straight away, they needed 24-hour nursing care for their child. He was basically explaining to me, “Oh yesterday, by the way, my child was blue because she had a seizure and I put her up to the monitor and it was 40% oxygen saturation”, and thankfully, he came back, but we had no idea how dangerous that is.

This is exactly what we’re dealing with here. It’s extremely dangerous, and it needs to be managed by critical care nurses 24/7 because that’s when quality of life can be improved at home.

So, this happened in the community, and then later they were going for a walk, and whilst some of you might think that’s not possible, but it absolutely is possible. It all comes down to having the right staff with the right mindset, having emergency equipment with you when you’re going out, of course, and also knowing and understanding how important it is for our clients that they have community access, that is very important.

So, I hope that illustrates what we can do.

What I also want to say is, if a client is at home on BIPAP or on CPAP, one needs deep suctioning, this is not the skill of a registered nurse. This is the skill of a critical care nurse. It’s definitely not the skill of a support worker. It’s the skill of critical care nurses with a minimum of 2 years, critical care nursing experience, ideally, the postgraduate critical care nursing qualification.

It’s also evidence-based. So, when you go to our website at intensivecareathome.com, you will find a section, the Mechanical Home Ventilation Guidelines, and in that section, you will find that exclusively critical care nurses with a minimum of 2 years critical care nursing experience are safe to look after ventilated, plus, minus tracheostomy clients at home, adults and children. So that means if you’re not having a critical care nurses 24/7, if your loved one is ventilated with a tracheostomy, if your loved one is ventilated without a tracheostomy, or if they’re having a tracheostomy without being ventilated, you’re putting your loved one at super high risk.

We can manage that risk here at Intensive Care at Home because we have a critical care nursing workforce and critical care nursing team that works in the community. We are employing hundreds of years of critical care nursing experience combined in the community. No other provider brings that high level of skill in the community.

So, with Intensive Care at Home, we’re therefore providing 24-hour critical care nurses at home, and therefore, we provide a genuine alternative to a long-term stay in intensive care for ventilation, tracheostomy, Home BIPAP (Bilevel Positive Airway Pressure), Home CPAP (Continuous Positive Airway Pressure), ventilation without tracheostomy, which is what the situation was all about that I explained today. But also, you need 24/7 critical care nurses for ventilation without a tracheostomy, it’s still an unstable airway and patients in the hospital that have a tracheostomy are usually in ICU or are on the ward with ICU nurses overseeing. We’re also providing Home TPN (Total Parenteral Nutrition), home IV potassium infusion, home IV magnesium infusion. We’re also providing ventilation weaning at home, we’re also providing central line management, PICC line (Peripherally Inserted Central Catheter) management, Hickman’s line management as well as port-a-cath management. We’re also providing IV antibiotics at home. We’re also providing nasogastric tube and PEG (Percutaneous Endoscopic Gastrostomy) tube management at home. We’re also providing palliative care at home.

Also, with Intensive Care at Home, we’re currently operating all around Australia, in all major capital cities as well as in all regional and rural areas. We are an NDIS (National Disability Insurance Scheme) approved service provider all around the country, TAC (Transport Accident Commission) and WorkSafe in Victoria, iCare in New South Wales, NIISQ (National Injury Insurance Scheme in Queensland), as well as the Department of Veteran Affairs (DVA) all around Australia. Our clients and we, as a provider, have received funding through public hospitals, private health funds, as well as Departments of Health.

We’re the only service provider in Australia that has achieved third-party accreditation for Intensive Care at Home nursing in 2024. We have been achieving this high level of accreditation since 2012. No other provider has achieved this high level of accreditation in the community in Australia and has created more intellectual property for Intensive Care at Home than we have. That puts us in a position to employ hundreds of years of critical care nursing experience combined in the community, and that also enables us to look after the highest acuity clients safely in the community.

If you’re at home already and you’re watching this, and you realize that you don’t have the right level of support, I’ll give you an example today. One of our first clients over 10 years ago was a client who was at home on a ventilator with a tracheostomy, with the support worker model 24/7. Of course, support workers cannot keep a patient at home on a ventilator with a tracheostomy. That’s like flying the airplane with a cabin crew instead of the pilot, because this guy was at very high risk of dying. He was going in and out of ICU because support workers simply do not have the skills, experience, knowledge, how to look after the ventilator and the tracheostomy at home. It’s an intensive care nursing skill and critical care nursing skill only. It’s not even the skill of a general registered nurse.

Eventually, this client in the hospital he was going to regularly and the ICU found out about us. We proved our concept there very quickly with this client. We worked with the client, and we sent him intensive care nurses 24 hours a day. He never ever went back into ICU ever again with our service, and he was safe.

We can do the same for you if you are not safe at home, or if you’re in a similar predicament, which includes the advocacy that goes along with it to get the relevant funding. We have always successfully advocated for our clients. Otherwise, we wouldn’t be in business.

If you’re watching this and you have a family member in intensive care long term or you are stuck in intensive care long term, please reach out to us as well. We can help you.

This is also one of the reasons why we’re providing Level 2 and Level 3 NDIS Support Coordination. We have a team of NDIS Support Coordinators, and they have a wealth of knowledge. One of our NDIS Support Coordinators, Amanda Riches, I’ve done a video interview with her, and I’ve linked towards it in this blog. One of our other NDIS Support Coordinators is Simon Wills. We are also providing TAC case management and WorkSafe case management in Victoria with Lucy McCotter.

If you are an NDIS Support Coordinator or a case manager from another organization watching this, if you’re looking for nursing care for your participants, please reach out to us as well. If you’re looking for funding for nursing care for your participants and you don’t know how to go about it and what evidence to provide, I encourage you to reach out to us as well. We can help you with the right level of advocacy. We also provide NDIS specialist nursing assessments done by critical care nurses with a legal nurse consulting background.

If you are a critical care nurse and you’re looking for a career change, we’re currently hiring for jobs for critical care nurses in the home in Melbourne, Sydney, Brisbane, in Albury, Wodonga, in Bendigo, in Geelong, and in Warragul in Victoria. If you have worked in critical care nursing for a minimum of 2 years, pediatric ICU, ED, and you have already completed a postgraduate critical care nursing qualification, we would be delighted hearing from you.

I have a disclaimer though, because we are offering a tailor-made solution for our clients, which includes regular staff and regular teams, our clients do want the same staff coming over and over again because they are so vulnerable and so special, that’s why we need regular staff. So, if you’re looking for agency work, or you want to come and go, this is not the right fit for you. We’re looking for consistency and our clients are looking for consistency. So please, only apply with us if you can give us regular and consistent availabilities for shifts, and you’re really keen on building relationships with us and with our clients.

If you’re an intensive care specialist or an ED specialist, we also want to hear from you. We’re currently expanding our medical team as well. We can also help you eliminate your bed blocks in ICU, ED for your long-term patients or for your regularly readmitting patients with our critical care nursing team at home. We’re here to help you take the pressure off your ICU and ED beds, and in most cases, you won’t even pay for it. Even if you do pay for it, it’s much more cost-effective than what you’re paying for in ICU and ED.

If you are a hospital executive watching this, and you have bed blocks in your ICU, ED, respiratory wards, please reach out to us as well. We can help you there fast.

If you’re in the U.S. or in the U.K. and you’re watching this and you need help, we want to hear from you as well. We can help you there privately.

Once again, our website is intensivecareathome.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected].

If you like my videos, subscribe to my YouTube channel for regular updates for families with Intensive Care at Home and intensive care, click the like button and click the notification bell, share this video with your friends and families, and leave your comments below what you want to see next, what you think about today’s topics, and what insights you have from this video.

Thank you so much for watching.

This is Patrik Hutzel from intensivecareathome.com and I will talk to you in a few days.

Take care for now.