Quick Tip for Families in Intensive Care: You Helped Save My Brother’s Life in ICU While He was Intubated! Thank You So Much for All Your Help!

Hi, it’s Patrik Hutzel from intensivecarehotline.com with another quick tip for families in intensive care.

So today, I have an email from Julie who says,

“Hi Patrik,

I was meant to thank you before because I’m reading all about your clients online in your testimonials and in your case studies and it made me to stop and write to you now. It is important you know.

My brother who has a severe intellectual and physical disability was born 61 years ago with spina bifida and hydrocephalus. Three years ago, he had a massive stroke and misdiagnosed in the emergency department, and he missed his chance for clot busters which resulted in great harm.

He is now quadriplegic, he can barely say a few words, and he can no longer eat and drink. He lost so much from already having started at such a disadvantage 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 lying flat with a chest vibration vest on. That is when he aspirated.”

Well, I have to stop here for a minute because that is just dangerous. It should never happen, as a critical care nurse, that you lie someone flat and you feed them, and you put a vibration vest on. That is a recipe for an aspiration pneumonia.

“That is when he aspirated. He was in originally only for UTI. UTI stands for Urinary Tract Infection. 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 was I.

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 that 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 so 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. So, while I didn’t become a client, you were a part of my team that was helping me make the best decisions for my brother.

I could write a book on what we went through that 2 months in the ICU. I went through more than 3000 pages of hospital records. We signed agreement 6 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 the first time when he barely passed the trial and because the mucus plug lodged, he had to be reintubated. That is what we were told. That is what we believed because that is not meant to be a book.

I will just tell you that we choose to not have a tracheostomy because it would have 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 Jeff and my parents, and he certainly would have 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 “ethically” was for us to agree to “comfort care”, an ill-defined term that my mother would never agree. Thus, the 6 changes in two weeks.

The 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 were all 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 we have his BIPAP (Bi-level Positive Airway Pressure) which he gets when he sleeps with severe sleep apnea, and she asked to resume the tube feeding. The nurse we had so trusted turned on us. It was like a horror movie where the ugliest, scariest demon comes shooting out of a normal person to attack you.

She accused our 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 a plan to help Jeff die was more important than to help him live.”

That is shocking to me. Why do people go into nursing or into medicine if they don’t want people to live and want to help them die? I don’t understand that, and that’s certainly not why I went into nursing. I want to help people live not die.

“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 a year but then with what he was saying was telling me the bottom line is that he’s at some point going to end up right back here. Well, so what? Isn’t that what 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. 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 needs to live. “Sure, no problem.” He would write the orders and off he went. Assured all was well, 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 on the BIPAP. Now, they were high. I’m actually grateful that she alerted me even though I believe for the wrong reasons.

Why were his heart rates 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 deaf doctor discontinued them under the guise of comfort care. I can’t 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 medications and anything else the prior doctor had discontinued without my knowledge. Jeff’s heart rate was in the high of 150s by the time he got his medicine. Had I not been there, I think he would have died from a stroke or a heart attack.

Jeff is now back at his residential group home, back with the 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 have 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 don’t understand, but we don’t need to, we just need to honor it.

Thank you so 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 wanted to encourage others to seek you out for your one-on-one professional guidance in a complex emergency life and death situation. There isn’t much time to learn what to do.

If I hadn’t had all my past experiences dealing with the medical establishment, being a nurse myself, listening to God and personally know the hospital’s former medical director, I wouldn’t have been able to do this.

Your service is really valuable and could help so many when they need it the most if they only found it.

Thank you. From, Julie.”

Well, Julie, thank you so much for writing this long email and detailed email. I think this is great that you’ve identified, the issues that were happening surrounding your brother because he would be dead by now if you hadn’t advocated for him. It was the right choice to not do a tracheostomy and extubate him and then get him back on his usual support.

It’s interesting that your mother pointed out that they would have euthanized him if it hadn’t been for your intervention and if it hadn’t been for your guidance and pointing towards all the things that they were doing wrong, including the aspiration pneumonia. Quality of life again is in the eye of the beholder, not in the eyes of an ICU unit. They are professionals. So, well done for advocating for your brother.

You didn’t need the ethics committee to convince you he should be living. You didn’t need the ethics committee to convince you he should be dying. Ethics committee in my eyes, from my experience, I’ve worked in critical care nursing for nearly 25 years in three different countries where I worked as a nurse manager for over 5 years. We’ve been consulting and advocating here at intensivecarehotline.com since 2013. I’ve been we’ve been saving many lives here with intensivecarehotline.com. You can verify that on our testimonial section and also on our intensivecarehotline.com podcast section where we have done client interviews.

So, it is crystal clear that hospitals are not always having the best interests of patients and families at heart. It is crystal clear that hospitals and ICUs often judge by what they perceive as a good or a poor quality of life.

On another note, here, Julie, your brother, if he hadn’t been that well, he could have gone home with Intensive Care at Home. You didn’t know at the time that Intensive Care at Home would also be an option. So obviously, they seem to be able to look after him in his group home, which is fine, but that’s all good. You’ve done an amazing, amazing job keeping your brother safe and alive.

It is shocking to hear that the nurse, one of the nurses was more determined to help your brother die than to help your brother live. That is really shocking and all I can say is, that’s not why I went into nursing. I went into nursing to help people live not to help people die.

So, in any case, thanks again Julie for writing in and for sharing this so generously. I’m glad you are in the 5% bracket of people that advocate. I do believe it’s less than 5%. I actually believe it’s 3% or 2% and potentially even only 1% that makes informed decisions, has peace of mind, control, power, and influence, making sure their loved ones actually get best care and treatment.

Anyway, that’s why we created the membership for families of critically ill patients in intensive care and where we help our members. You can become a member if you go to intensivecarehotline.com if you click on the membership link or if you go to intensivecaresupport.org directly. In the membership, you have access to me and my team, 24 hours a day, in the membership area and via email and we answer all questions, intensive care related.

In the membership, you also have exclusive access to 21 e-books and 21 videos that I have personally written and recorded, and those e-books and videos will help you to make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets best care and treatment, so that you can influence decision making fast.

I also do one-on-one consulting and advocacy over the phone, Zoom, Skype, WhatsApp, whichever medium works best for you. I talk to you and your families directly. I handhold you through this once in a lifetime situation that you simply can’t afford to get wrong. I also represent you in family meetings with intensive care teams. I also talk to doctors and nurses directly.

I ask all the questions that you haven’t even considered asking but must be asked when you have a loved one, critically ill in intensive care.

We also do medical record reviews in real time. We also do medical record reviews after intensive care if you have unanswered questions, if you need closure, or if you are suspecting medical negligence.

All of that, you get at intensivecarehotline.com. Call us on one of the numbers on the top of our website or send us an email to support@intensivecarehotline.com with your questions.

If you like my videos, subscribe to my YouTube channel for regular updates for families in intensive care, click the like button, click the notification bell, comment below what you want to see next, what questions and insights you have from this video, share the video with your friends and families.

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Thank you so much for watching.

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

Take care for now.

Kind regards,

Patrik

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