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My Mother’s Been in ICU for 2 Months Ventilated & Tracheostomy Unable to Wean, Can She Go Home?
If you want to know if Intensive Care at Home is the right decision for your critically loved one in ICU if they’ve been there for many weeks and many months, so then stay tuned! I will answer that question for you today.
Hi, my name is 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 at home whilst providing quality care for long-term ventilated adults and children with tracheostomies at home. We also provide care to otherwise medically complex adults and children at home including Home BIPAP (Bilevel Positive Airway Pressure), Home CPAP (Continuous Positive Airway Pressure) ventilation, home tracheostomy care when adults and children are not ventilated, also Home TPN (Total Parenteral Nutrition), home IV potassium infusions, home IV magnesium infusions as well as IV antibiotic infusions at home. We also provide port management, central line management, PICC (Peripherally Inserted Central Catheter) line management, Hickman’s line management as well as palliative care at home, and that also includes ventilation weaning.
We’re also providing our CCRNs for home care to avoid emergency department readmissions. Besides keeping ICU beds empty, we also keep ED beds empty by sending our CCRNs into the home to avoid emergency department presentations.
Now, today I have an email from Morgan, and Morgan says,
“Hi Patrik,
My mom is in ICU after an emergency open heart surgery, CABG (coronary artery bypass graft) three months ago and they said, this stays up in ICU and we can either take her home with a ventilator or let her die.
Before all of this, she had no prior health problems other than breast cancer 15 years ago and she survived the chemotherapy and radiation therapy. She had complications during a cardiac catheter procedure which resulted in a coronary dissection and cardiogenic drug, which is the reason for the emergency coronary artery bypass graft or open heart surgery.
She had multiple complications after the surgery including bleeding, heart failure, and three days of CRRT. CRRT stands for continuous renal replacement therapy, also known as hemodialysis or hemofiltration. Her kidney functions are close to normal.
Now, she was on sedation for 14 out of 21 days in ICU before having a tracheostomy. Then we were told she had severe sepsis and two small strokes that were discovered once the CT scan was done in ICU. Then, she had the tracheostomy during her stay since she was unable to come off the ventilator and it’s been challenging ever since
Since she had open heart surgery, her ejection fraction (ejection fraction means the contractility of the heart and how well it’s pumping), so her ejection fraction is 40%. But we are now being told she has metabolic encephalopathy since she is not consistently responsive to commands, and she has been back on sedation for the last 14 out of her 29 days since she had the tracheostomy. She has also been failing her ventilation weaning. I believe this has to do with the fact that she has been back on sedation due to anxiety and becoming tachypneic (tachypneic means a fast-breathing rate). The settings are FiO2 (Fraction of Inspired Oxygen) of 30% and PEEP of 5.
We feel the ICU team are giving up on her because she’s costing them too much time and resources. We want her home because we can’t see any way forward in the ICU because she has no quality of life and she’s very anxious and we think she will be so much better off at home with Intensive Care at Home. They are making me feel guilty as if I’m making her suffer, but if there’s any hope, I want to give that to her at home. Any advice how to make that happen would be helpful. Thank you.
From, Morgan.”
Morgan, thank you so much for detailing your mom’s situation.
Now, first off, don’t let make anyone feel you guilty. I’ve made a video about this a while ago, even a live show about it, how to avoid the intensive care team guilt tripping you or something to that effect with the title of that because I’m well aware that the intensive care teams want to make families feel guilty for wanting to keep their loved ones alive. What’s wrong with that? What is wrong with keeping and trying to keep your loved one alive and having hope and not let her die if there are other avenues which you want to pursue.
Clearly, by her being on sedation while she’s in ICU, from my experience, I’ve worked in critical care for nearly 25 years as a critical care nurse where I also worked as a nurse manager for over 5 years and we’ve been providing Intensive Care at Home since 2012, so I have extensive experience in this space. One of the reasons someone has a tracheostomy is to get them off sedation completely so that they can be weaned off the ventilator.
Another challenge that you’re having in ICU is she’s anxious because she’s not in a familiar environment, and there is no quality of life in intensive care. Going home not only improves the quality of life for your mother, it also improves the quality of life for you as a family because you no longer have to be in ICU day in and day out, and spending days and nights there to be with your mom because having you there would probably also help with her anxiety, but nothing will help more with her anxiety besides going home and being in her own familiar environment.
Now, you are saying her settings are FiO2 of 30% and PEEP of 5. Now, that only gives me a very limited snapshot on what she’s really on because you haven’t shared whether she is breathing on CPAP or pressure support or whether she’s in a controlled mode where the ventilator is doing most of the breathing or whether she’s doing most of the breathing. Either way, going home is possible as long as your mom is hemodynamically stable, you haven’t mentioned anything that she is on inotropes or vasopressors. She might have a metabolic encephalopathy and she might have had a stroke, but once again, recovery and rehabilitation can start at home with the right team. We can certainly help you with the right team being in place, whether that’s our nursing team, of course, whether that’s the OT, the physio, speech therapy and so forth. She needs to start with rehabilitation, she needs to come off sedation because being on sedation is not conducive to her weaning off the ventilator, it’s as simple as that. You will also see that once going home, you will find that having a regular team of nurses that you know, like, and trust is much better than being in an ICU where you probably have a different nurse every day and they don’t know your mom. So, there’s no consistency of care and that also often stops patients from being weaned off the ventilator because there’s no consistency in staff, there’s a high staff turnover, there’s travel nurses and agency nurses coming and going, and there’s just no consistency. It’s critically important in situations like that, that you have a regular team, that the same team of nurses and doctors work with your mom day in day out. What patients need in a situation like that is a regular team that takes ownership, and it doesn’t sound to me like the ICU team here is taking ownership of getting your mom to a better place, especially if they are sedating her.
It’s also a case of talking your mom through what’s happening. Yes, it sounds to me like she’s neurologically still impacted with the metabolic encephalopathy and with the strokes, but once again, her going home gives us so much more peace of mind, gives you so much more peace of mind, and the right people can come into your home.
So, I hope that answers your question. You should reach out to us directly, so then we can have a chat about funding and who’s going to pay for it. But you shouldn’t be worried too much about who’s going to pay for it because at the moment, whoever is paying for it is paying $5000 to $6000 per bed day for the intensive care bed, whereas Intensive Care at Home is approximately 50% of that cost. So, it’s a win-win situation.
Also, the intensive care team is clearly highlighting to you that they want your mom out, that they want to send her out of ICU which means clearly, they’re needing a bed. By her going home, they’re achieving getting that bed freed up, once again, it’s a win-win situation.
Now, with Intensive Care at Home, we are currently operating all around Australia in all major capital cities as well as in regional and rural areas. We are a NDIS (National Disability Insurance Scheme) approved service provider all around Australia. We are a TAC (Transport Accident Commission) approved and WorkSafe approved service provider in Victoria, iCare in New South Wales, NIISQ (National Injury Insurance Scheme) in Queensland, as well as a DVA (Department of Veteran Affairs) approved service provider all around Australia. We have also received funding through public hospitals, departments of health as well as private health funds.
So, reach out to us at intensivecareathome.com. Call us on one of the numbers on the top of our website or send us an email to [email protected].
Like I mentioned, we are also sending our critical care nurses into the home or into residential aged care to keep emergency departments empty and avoid emergency department presentations. If you want that for your hospital or for your residential aged care or for your family member at home, please reach out to us as well. We have done this successfully for the Western Sydney Local Area Health District for the in-touch program to keep their emergency department empty.
If you are at home already and you have insufficient support for your loved one or for yourself, I also encourage you to reach out. We know a lot of patients on ventilation, tracheostomy at home with insufficient support and they’re going back to hospital all the time, they’re not improving their quality of life and they’re not having the right teams assembled around them, we can definitely help you with that. They’re also often not having the right funding for their condition at home. Once again, we can help with funding for critical care nurses because otherwise, we wouldn’t be in business if we hadn’t successfully advocated for our clients.
Now, we’re also providing Level 2 and Level 3 NDIS Support Coordination and if you want to know more about our Level 2 and Level 3 NDIS support coordination, Amanda is our NDIS support coordinator and I’ve actually done an interview with Amanda which I will link to below this video.
If you are a NDIS support coordinator from another organization and you’re looking for nursing care for your participants, please reach out to us. We are also providing NDIS specialist nursing assessments or we’re providing nursing assessments for any other funding body or organization you need them for, especially when it comes to very complex ventilated and tracheostomy clients in the community or in hospitals. If you’re a NDIS support coordinator, struggling with getting nursing care for your participants, please reach out to us as well. Once again, we have been successfully involved in the advocacy of our clients from Day 1.
If you are a critical care nurse and you’re looking for a career change, we want to hear from you as well. If you have worked in critical care for a minimum of two years and you ideally have completed a postgraduate critical care and nursing qualification, we want to hear from you. We currently have jobs in Sydney, Melbourne, Brisbane, Albury, Wodonga, Bendigo in Country Victoria, as well as in Warragul in Country Victoria, we want to hear from you.
Please keep in mind we are looking for critical care nurses that want to complement our team. We want to hire staff that give us regular availabilities because that is what our clients want. Our clients want regular staff that’s why we can provide a tailor-made solution for our clients and their families and that is what they want. So, if you’re looking for agency work, coming and going, that isn’t going to work for you because we need regular staff.
If you’re an intensive care specialist, we’re currently expanding our medical team as well. We want to hear from you.
If you’re an intensive care specialist and you have bed blocks in your ICU, I encourage you to eliminate your bed blocks because we can help you do that. But more importantly, we improve the quality of life and sometimes quality of end of life for your patients and their families and you won’t even pay for it.
If you’re a hospital executive watching this, we also want to hear from you because once again, we can help you eliminate bed blocks in ICU, ED, respiratory wards, etc.
Once again, our website is intensivecareathome.com. Call us on one of the numbers on the top of our website or send an email to [email protected].
If you’re in the U.S. or in the U.K. or in Canada, please reach out to us. We can help you there privately.
If you like my videos, subscribe to my YouTube channel for regular updates for Intensive Care at Home and also for families in intensive care. Click the like button, click the notification bell, comment below what you want to see next and what questions and insights you have from this video, and share the video with your friends and families.
I also do a weekly YouTube live where I answer your questions live on the show and you get notification for the YouTube Live if you’re a subscriber to my YouTube channel, or if you are a subscriber to our email newsletter at intensivecareathome.com.
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.