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If you want to know if your loved one can go home with cerebral palsy, scoliosis, epilepsy, osteoporosis, a G-tube, tracheostomy, and ventilation, stay tuned. I’ve got news for you.

My name is Patrik Hutzel from intensivecareathome.com and I’ve got another email here from one of our readers from AJ who says,

“Hi Patrik, 

I’m the guardian and power of attorney for my sister. She has cerebral palsy, scoliosis, epilepsy, osteoporosis, and the PEG tube. She’s been hospitalized with aspiration pneumonia 5 weeks ago now. She also had a recent PEJ tube and now she got a tracheostomy two days ago and she’s ventilated.

The focus has been on securing her respiratory airway, but now her GI issues continue from gastric paralysis. The GI issues began with the hospitalization, all the medications on and off for 5 weeks now. 

She has gotten very little nutrition. The original weight of around 70 kg now is looking very skinny. She’s still going slow on feeds and getting high residuals. The concern is that she’s not absorbing or processing her nutrition.

Her heart rate and blood pressure were high all day today and not resolve with other things. I asked about TPN, and they can’t do a PICC (Peripherally Inserted Central Catheter) line because of her anatomy and so, it would have to be a port-a-cath but the doctor saying no, it’s too high risk for infection.

I’m freaking out now thinking they’re just going to let her die. What else can I do? Do I keep pushing or ask to transfer her to another hospital? I also asked to transfer before and they said no, but I want her to come home now once they’ve got her nutrition sorted.”

Now, AJ thank you so much for email. I think it’s a great idea that you’re reaching out and it’s a great idea to get your sister home once she has the nutrition sorted.

Now, they might be getting her nutrition under control with a PEJ tube instead of a PEG tube. Now, and you would have heard me saying on other videos that I oppose a PEG tube in a situation like that. I am probably not opposed to a PEG tube. I’m actually advocating for a PEG or a PEJ in this situation because for a patient with cerebral palsy, scoliosis, epilepsy, and so forth, it’s unlikely that she will come off the ventilator. Not impossible. Or if she comes off the ventilator, she probably needs a tracheostomy.

We have patients at home or clients at home with cerebral palsy that are on ventilators and tracheostomy and it’s going to be very difficult weaning your system off the ventilator and the tracheostomy from my extensive experience.

I have worked in critical care nursing for 25 years in three different countries where I worked as a nurse unit manager in intensive care for over 5 years, and I’ve been setting up Intensive Care at Home here in Australia since 2012. So, I do have a fair amount of experience in this space that I think I can make an informed comment here and decision.

So, TPN and a port-a-cath, absolutely possible. It’s nonsense that it’s infection risk, especially if your sister will be going home because there’s much less infection risk at home than compared to a hospital. In a hospital, you’re surrounded by bugs from other patients. Whereas at home, it’s a clean environment. So, with a clean environment, it is so much easier to manage the port-a-cath and there’s very little risk for infection.

So, I’m also advocating here for TPN. It’s absolutely possible, but maybe they can sort it out with a PEG and PEJ that would be preferred. I don’t know whether they’ve tried metoclopramide. I don’t know whether they’ve tried erythromycin. I don’t know whether they tried to change the constitution of feeds. You need to talk to them, what other options there might be and what other options there are. So, that’s very important that you can sort it out before the sister is going home.

So, from my perspective and from my experience, we have looked after so many clients at home in similar situations to your sister, she will be thriving at home because there’s no quality of life in an ICU but there is absolutely quality of life in someone’s home.

So, keep pushing forward. Get the nutrition sorted, whether that’s with PEG, PEJ, or with TPN, and then we can sit down and take the next steps and take your sister home. We also need to work on the funding, but we can help you with that with the right level of funding. Otherwise, if we weren’t able to achieve that outcome for our clients, we wouldn’t be in business. So, it’s very important that you understand, we’re also advocating for your sister for the funding if funding is an issue, but we can cross that bridge as the next step.

So, with Intensive Care at Home, we are providing 24-hour critical care nurses at home, and 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, tracheostomy without ventilation, Home TPN (Total Parenteral Nutrition), and home IV potassium infusions, home IV magnesium infusions. We’re also providing palliative care at home. We also providing ventilation weaning at home, tracheostomy weaning. We’re also providing central line management, PICC (Peripherally Inserted Central Catheter) line management, as well as Hickman’s line management. We’re also providing nasogastric tube management and PEG tube management at home.

We’re also sending our critical care nurses into the home for emergency department bypass services. We have done so successfully as part of a program at the Western Sydney Local Area Health District, their in-touch program, saving approximately $2,000 per patient that we keep at home instead of going to ED.

We’re also in a position to cut the cost of an intensive care bed by around 50%. An intensive care bed costs around $5,000 to $6,000 per bed day. Our service costs between $2,500 and $3,000 per bed day and we’re freeing up an ICU bed and we’re improving the quality of life for patients and their families. So, it’s a win-win situation all around. 

With Intensive Care at Home, we are currently operating all around Australia and all major capital cities as well as in 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), Department of Veteran Affairs all around the country. Our clients and we, as a provider, have also received funding through public hospitals, private health funds, as well as Departments of Health.

We are the only service provider in Australia that has achieved third-party accreditation for Intensive Care at Home nursing in 2024. We’ve been achieving this level of accreditation since 2012. No other provider has achieved this high level of accreditation in the community and has created more intellectual property for Intensive Care at Home than we have, and that puts us in a position to employ hundreds of years of critical care nursing experience combined in the community. No other service provider employs a higher skill level in the community than we do, which enables us to look after the highest security adults and children in the community in Australia. No other provider in Australia can take on a higher acuity safely in the community than we can.

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 will give you a tangible example here, one of our first clients over 10 years ago was a client who was at home on a ventilator with the tracheostomy with the support worker model. Of course, support workers can’t keep a patient at home on a ventilator with the tracheostomy that’s like flying the airplane with the cabin crew instead of the pilot because this client was at high risk of dying and he was going in and out of ICU because support workers simply don’t have the skills, the experience or knowledge how to look after the ventilator and the tracheostomy client. It is an intensive care and critical care nursing skill. 

Then eventually the client found us, and we were proving our concept with this client very fast when 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 and he was safe. We can do the same for you if you’re not safe at home, including the advocacy that goes along with it to get the relevant funding. We have always successfully advocated for our clients, otherwise we would not be in business. 

That’s also 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. I will put into the written version of this blog to an interview that I’ve done with Amanda Riches, who’s one of our NDIS Support Coordinators. We’re also providing TAC case management, WorkSafe case management in Victoria.

If you’re an NDIS Support Coordinator or a case manager from another organization watching this and 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. 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, and Bendigo, in Geelong, and in Warragul in Victoria. If you have worked in critical care nursing for a minimum of two years, pediatric ICU, ED, and you have already completed a postgraduate critical care nursing qualification, we will 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, our clients won’t have the same staff coming over and over again because they are so vulnerable and so special and that’s why we need regular staff. So, if you are looking for agency work where you can come and go, this is not the right fit for you. We are 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 if you’re really keen on building relationships with us and with our clients, otherwise it’s not going to work.

If you’re an intensive care specialist or an ED specialist, we also want to hear from you. We are currently expanding our medical team as well. We can also help you eliminate your bed blocks in ICU and 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 in ICU or in ED.

If you’re a hospital executive watching this and you have paid blocks in your ICU, ED, respiratory wards, et cetera, please reach out to us as well. We can help you 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 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, click the notification bell, share this video with your friends and families, and leave your comments below what you want to see next, what do you think about today’s topic, 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.