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Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another question from our readers and the question was
Is Intensive Care at Home the Best Option for My Mom in ICU?
You can check out last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to share a testimonial from one of our clients.
Testimonial from Julie: “Your Intensive Care Hotline Service is Very Valuable & Could Help So Many When They Need it the Most!”
Hi, it’s Patrik Hutzel from intensivecarehotline.com where we instantly improve the lives for families of critically ill patients in intensive care so that you can make informed decisions, have peace of mind, real power, real control, and so that you can influence decision-making fast, even if you’re not a doctor or a nurse in intensive care.
This is another episode today. It’s actually not a “Your Questions Answered” episode, but it’s actually another testimonial that we have from a very happy client, and I just simply want to read it out to you. It’s actually from Julie, and Julie was happy for us to share it here on the blog and on YouTube, so I’ll just read this out to you.
Hi Patrik,
I meant to thank you and your team before now, but reading about this client and his gratitude made me stop and write you right now. It is important for you to know.
My brother, who has severe intellectual and physical disability was born 61 years ago with spina bifida and hydrocephalus. Three years ago, he had a massive stroke. They misdiagnosed him in the emergency department, and he missed his chance for clot busters, which resulted in great harm. He’s now, unfortunately, quadriplegic, can barely say a few words, and no longer can eat. He lost so much from already having started at such a disadvantaged place in life. It feels so cruel, and yet he wants to live.
Back in October, he landed in ICU, intubated for aspiration pneumonia that I later found out a nurse on the floor was responsible for. She tube-fed him when he aspirated. He was in originally for a UTI.” UTI stands for Urinary Tract Infection.
“When my brother was intubated…” Intubation means the insertion of a breathing tube or an endotracheal tube in the mouth and attach it to a ventilator. “When my brother was intubated, I flew to New York to try to help, as my parents are in their 80s and it was clear they needed me there for help. After two days, they took Jeff off the sedation and he was with us in his expressions and eye contact, so I thought he’d be extubated quickly, and I would likely be leaving in a week. How wrong I was.
Days went by and he couldn’t pass their breathing trials. Why? He was breathing on his own until he aspirated. Then the pressure from the ICU doctors came. This is when I found you and your video series online. I have always been that 5% who advocates, asks a lot of questions, and stands my ground because Jeff always required that commitment, and I learned well watching my parents being strong and fearless for my brother.
This was different, even with all my years of practice. I can see why people really need your insights and guidance. Because this is such a life-and-death decision, and in a pressured situation with people who you think you can trust, but to do, is dangerous to your loved one.
I needed to hear from you about the different agendas and the behind-the-scenes meetings that take place. That made me know what I already felt and gave me the courage to stand up and fight for my brother. While I didn’t become a client, you were a part of my team and that was helping me make the best decisions for my brother.
I could write a book on what we went through that two months in the ICU. I went through more than 3,000 pages of hospital records. We signed New York State MOLST (Medical Orders for Life-Sustaining Treatment) agreement six times in two weeks, dealt with attorneys, the state, hospital ethics committee meetings, and my whole family got COVID, except my brother.
We were led to believe that my brother would die when extubated the second time. He made it only 24 hours for the first time, when he barely passed the trial. And because a mucus plug lodged, he had to be reintubated. That is what we were told. That is what we believed. Because this is not meant to be a book.
I will just tell you that we chose to not have a tracheostomy because it would’ve doomed him to being sent away from my parents who, for 61 years, have fought for him to have the best quality of life possible. This certainly would be the cruelest outcome for my brother, Jeff, and my parents, and he certainly would’ve died alone in the hands of people who never knew him and would lack the ability to properly take care of him.
Our only humane option was removing the tube. The only way they could do that…” And she puts that in quotes, “‘ethically’, was for us to agree to…” And again, she puts that in quotes, “comfort care.” An ill-defined term that my mother would never agree, thus the six MOLST changes in two weeks.
A day was picked for the tube to come out. The nurse we had grown to trust said she got approval as we requested her to be the one to help Jeff and us through this. We all were there. Coffee and snacks were brought in Jeff’s room for us. They took the tube out and I watched the grayed-out monitor. They grayed it so it’s not tracked anymore in the telemetry room, I was told.
His eyes were alert, but his oxygen levels were dropping 97, 96, 95, 87, my heart sunk. I kept watching, 88, 89, 90, 91, 97, Jeff and God did that. He wanted to live, and he just showed me he could.
My mother quickly asked that he have his BIPAP which he gets when he sleeps, for severe apnea, and she asks to resume tube feeding. The nurse we had so trusted, turned on us. It was like a horror show, where the ugliest, scariest demon comes shooting out of a normal person to attack you. She accused my mother, saying, “This is not what you agreed to, and you signed to this, and now I’m going to have to call the doctor back to the hospital.” In shock, I realized her plan to help Jeff die was more important than to help him live.
The doctor came back and talked with Mom, Dad, and me. I finally thought to ask him, how long do you think Jeff will live? He hemmed and hawed. He couldn’t say maybe months or maybe a year. But then, what he was saying was, telling me the bottom line, “He is at some point going to end up right back in here.” So what? Isn’t that a hospital is there for, to help those who need help? They wanted him to die.
Maybe they think his quality of life is so bad and I agree, I can see how they can think that way based on our values of quality, that they thought he should die, and they should help him to do that. Now, I saw why my mother was accusing them of euthanasia because that was the thought behind it. I’m still learning the wisdom of my 84-year-old mother.
The doctor, in exasperation, left after 40 minutes of getting nowhere, to have dinner with his family. The new doctor came in and was friendly. He remembered my brother from the stroke. He, however, was hurried as he was covering both ICUs.
What did we want? Mom said, “The tube feedings, BIPAP, whatever he needed to live.” “Sure, no problem”, he could write the orders and off he went. Assured all was well with my family. When my family left, I stayed. The demon nurse popped her head in as she was leaving to let me know that Jeff’s heart rate was much better before we had him put back on the BIPAP. Now, they were high. I’m actually grateful that she alerted me even though, I believe, for the wrong reasons.
Why was his heart rate still climbing? Then it hit me. Had they taken away his cardiac medications? Immediately, I asked the new nurse. There’s no cardiac medications at all. The death doctor discontinued them under the guise of comfort care. I cannot imagine how having your heart pound out of your chest is comfortable. I immediately had the nurse get the new doctor to reinstate his heart medicines and anything else the prior doctor had discontinued without my knowledge. Jeff’s heart rate was in the high 150s by the time he got his medicine. Had I not been there, I think he would’ve died from a stroke or a heart attack.
Jeff is now back at his residential group home, back with people who know how to care for him, back to where my parents and uncle and friends go to see him regularly. He’s happy to be alive. I know this because he’s my older brother and I’ve known him my entire life. I can tell by looking in his eyes.
I stayed true and held strong for his will and his wishes. It is not for me to judge why he wants to live in the condition he lives. That is his choice, and it is my duty to help him. This has taught me there is so much about life and spirit that we do not understand, but we don’t need to. We just need to honor it.
Thank you so very much for offering your free information. You have likely helped many people you will never know. I wanted you to know how you helped us. I also want to encourage others to seek you out for your one-on-one professional guidance. In a complex, emergency, life-and-death ICU situation, there isn’t much time to learn what to do.
If I hadn’t had all my past experience in dealing with a medical establishment, being a nurse myself, listening to God, and personally knowing the hospital’s former medical director, I wouldn’t have been able to do this. Your service is very valuable and could help so many when they need it the most.
Thank you.
From Julie.”
Recommended articles:
- Testimonial from a very happy client,we’ve helped to save a life after ICU wanting to stop treatment
Julie, thank you so much for sharing your and your brother’s story. It doesn’t matter that you weren’t a paying client, that’s the whole purpose of this blog and the videos: that we help people. If they want to become a client, they’re welcome to do so, but if they read the free information and use it to their advantage, then that’s the whole purpose. That’s the goal here. And I’m very grateful that you’ve shared this.
Now, I could probably ramble on for the next half an hour about this, having worked in intensive care for over 20 years in three different countries myself, and also because we are running Intensive Care at Home, so we are dealing with many clients in the home that are in similar situations like your brother. They have complex medical conditions. They have disabilities. They’re life support dependent, like your brother is on BIPAP.
I completely understand where you are coming from because I’ve seen the ICU side and I’m seeing the ICU side. And I’m seeing, in my Intensive Care at Home service, the disability aspect in the community. Very few people understand that those two different aspects of care have an overlap, i.e., ICU, and then, complex disabilities with complex medical disabilities or conditions. There’s an overlap, which is where Intensive Care at Home is coming in.
I can totally understand where you and your family are coming from. I can totally understand your brother. I can totally understand your parents who love your brother dearly and who want him to have the best quality of life, no matter what.
For our Intensive Care at Home clients in particular, we need to fight this fight every day, whether it’s in the community or in hospitals, to help them live.
What we see on a day-by-day basis is very similar to what you’re describing. People think, “Oh, this client, this person, this child, this adult, shouldn’t live. They won’t have any quality of life.” Well, ask the families. And like you said, those people are very complex to look after, and it takes a unique, special approach to make it happen.
We need fantastic staff to make it happen. And we have fantastic staff, so shout out to our Intensive Care at Home team here that makes this happen. It takes time to get to know clients and their uniqueness and their routine. What do they respond to? What do they want? They’re often nonverbal. How do they want the BIPAP on? How do we manage seizures? How do we manage the seizures with BIPAP, off BIPAP? It’s very, very complex.
But I’m really grateful that you’ve shared this situation with me. And I can only imagine how you had to deal with the ICU doctors, with the ethics committee. The ethics committee, claiming that they are the only ones knowing what’s “in the best interest” of your brother, and as we all know, that’s ludicrous. Because those people do not understand what’s happening on a day-by-day basis in the community. They only see their little world in hospitals and in ICU, without really understanding on a day-by-day basis what needs to happen to maximize the quality of life for your brother and keep him out of ICU.
It sounds like he’s got a good place there in New York, which is fantastic. Your next challenge is to keep him out of ICU, predictably, so it doesn’t have to go through all the drama again. And it sounds like you’ve been through a lot of drama there yourself.
Thank you so much for sharing your brother’s situation and your family’s journey. I know your brother is in very good hands, by the sounds of things, by having a family who’s fighting for him. Again, I can’t thank you enough for sharing your story.
If you have a loved one in intensive care, How can you become the best advocate for your critically ill loved one, make informed decisions, get peace of mind, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?
You get to that all important feeling of making informed decisions, get PEACE OF MIND, CONTROL, POWER AND INFLUENCE when you download your FREE “INSTANT IMPACT” report NOW by entering your email below!
In Your FREE “INSTANT IMPACT” report you’ll learn quickly how to make informed decisions, get PEACE OF MIND, real power and real control and how you can influence decision making fast, whilst your loved one is critically ill in Intensive Care! Your FREE “INSTANT IMPACT” Report gives you in-depth insight that you must know whilst your loved one is critically ill or is even dying in Intensive Care!
Sign up and download your FREE “INSTANT IMPACT” REPORT now by entering your email below! In your FREE “INSTANT IMPACT” REPORT you’ll learn how to speak the “secret” Intensive Care language so that the doctors and the nurses know straight away that you are an insider and that you know and understand what’s really happening in Intensive Care! In your FREE report you’ll also discover
- How to ask the doctors and the nurses the right questions
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
- How to Eliminate fear, frustration, stress, struggle and vulnerability even if your loved one is dying
- 5 mind blowing tips & strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation
- You’ll get real world examples that you can easily adapt to you and your critically ill loved one’s situation
- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
- You’ll get crucial ‘behind the scenes’ insight so that you know and understand what is really happening in Intensive Care
- How you need to manage doctors and nurses in Intensive Care (it’s not what you think)
Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!
Make sure you also check out our “blog” section for more tips and strategies or send me an email to [email protected] with your questions!
Also, have a look at our membership site INTENSIVECARESUPPORT.ORG for families of critically ill Patients in Intensive Care here.
Or you can call us! Find phone numbers on our contact tab.
If you want a medical record review, please click on the link here.
Also check out our Ebook section where you get more Ebooks, Videos and Audio recordings and where you can also get 1:1 counselling/consulting with me via Skype, over the phone or via email by clicking on the products tab!
This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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