Podcast: Play in new window | Download

Subscribe: Apple Podcasts | RSS

Quick Tip for Families in Intensive: Guillain-Barré, Cardiac Arrest, Coma & Ventilator Dependence – What’s Next?

“Guillain-Barré syndrome, cardiac arrest, coma, and ventilator dependency – What’s next?” That is a question that I have from a reader today.

My name is 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, control, power, and influence, even if you’re in a situation that feels hopeless, even if you’re not a doctor or a nurse in intensive care, and so that your loved one gets best care and treatment always.

So, today’s question comes from a subscriber who says:

“Hi, Patrik. My son has Guillain-Barré syndrome AIDP (Acute Inflammatory Demyelinating Polyneuropathy), then a cardiac arrest, then a coma for one month. He’s now been out of the coma for one month. He’s only opening his eyes and moving his neck. He’s following verbal commands with his eyes and slightly with his neck. He’s ventilator  and tracheostomy dependent. He’s only taking 5 to 6 breaths spontaneously. What is next?”

Well, first of all, I want to acknowledge how far your son has already come from Guillain-Barré syndrome, cardiac arrest, and a month in a coma, to now following commands. That’s huge progress. ICU staff often underestimate what this means, but I can tell you from decades’ worth of critical care nursing experience, this is evidence of brain activity and potential for further recovery.

Now, what is next?

Number one, he needs aggressive and structured ventilator weaning trials, not just “let’s see how he goes,” but a proper protocol to build up his spontaneous breathing time step by step. If ICU doesn’t have a weaning plan, you need to request one. A lot of weaning doesn’t happen or goes wrong if there’s no weaning plan step by step.

Number 2, you need specialist neurorehabilitation. Guillain-Barré recovery is slow, we’re talking about months or years because nerves need time to repair, but the good news is they do repair. Your son needs physiotherapy and occupational therapy early, even while ventilated.

Number 3, prevent ICU-acquired weakness. The longer he’s immobile, the harder the recovery becomes. Passive and active mobilization need to start right now. He needs to get out of bed right now. Even if you think that’s possible or even if you think it’s difficult or impossible, it’s not. A good ICU will get your son mobilized right now.

Number 4, avoid prolonged ICU stays. They carry high infection risk and slow down recovery. If the hospital is pushing for discharge, but he still needs a ventilator and tracheostomy, you have options. For example, go and have a look at intensivecareathome.com. That’s where we provide Intensive Care at Home level care in the comfort of your own home, while continuing rehabilitation.

Number 5, family advocacy and patient advocacy for your son is non-negotiable. Hospitals and ICUs will sometimes push timelines for discharge based on bed availability, based on how much money they want to make with your son, not your loved one’s needs. You must strive for your plan, not them.

I’ve seen many Guillain-Barré patients make remarkable recoveries, walking, talking, and breathing again, even after being “written off” by ICU teams.

Also, make sure he’s getting IV immunoglobulins or IV immunoglobulin therapy that is also essential for a patient with Guillain-Barré syndrome.

If you need help steering your son’s care in the right direction, making sure he gets the best care and treatment in the right place at the right time, go to intensivecarehotline.com now and call us on one of the numbers on the top of our website or email me at [email protected]. We will help you take control, make informed decisions, and speed up recovery, all while avoiding the pitfalls of ICU discharge planning.

I have worked in critical care nursing for 25 years in three different countries where I worked as a nurse manager for over 5 years in intensive care. I’ve been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com. I can very confidently say that we have saved many lives with our consulting and advocacy because of our insights. You can verify that on our testimonial section at intensivecarehotline.com. You can verify it on our intensivecarehotline.com podcast section where we have done client interviews because our advice is absolutely life changing.

The biggest challenge for families in intensive care is simply that they don’t know what they don’t know. They don’t know what to look for. They don’t know what questions to ask. They don’t know their rights, and they don’t know how to manage doctors and nurses in intensive care.

That’s why we help you to improve your life instantly, making sure you make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets best care and treatment always. That’s why you can join a growing number of members and clients that we have helped over the years, saving their loved ones’ lives.

That’s why I do one on one consulting and advocacy over the phone, Zoom, 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 cannot afford to get wrong. When I talk to families directly, I also talk to doctors and nurses directly, asking 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.

I also represent you in family meetings with intensive care teams.

We also do medical record reviews in real time so that you can get a second opinion in real time. We also do medical record reviews after intensive care if in case you have unanswered questions, if you need closure, or if you are suspecting medical negligence.

We also have a membership for families of critically ill patients in intensive care, and 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 eBooks and 21 videos that I have personally written and recorded. All of that will help you to improve your life instantly, make informed decisions, have peace of mind, control, power and influence, making sure your loved one gets best care and treatment always.

All of that you get at intensivecarehotline.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected] 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, share the video with your friends and families, and comment below what you want to see next, what questions and insights you have from this video.

I also do a weekly YouTube live where I answer your questions live on the show. You will get notification for the YouTube live if you are a subscriber to my YouTube channel or my intensivecarehotline.com email newsletter at intensivecarehotline.com.

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.

Related Articles:

Quick Tip for Families in Intensive Care: How to Handle my Wife’s Setbacks in ICU After Day 70! Quick Tip for Families in Intensive Care: My 68-year-old Dad had a Pulmonary Embolus (PE), He had Thrombolytics, Followed by a Hemorrhagic Stroke, Help! Quick Tip for Families in Intensive Care: Ventilator Removal vs Tracheostomy on My Dad Who Has Passed Spontaneous Breathing Trials! 2nd Discharge to LTAC from ICU, the Madness Continues! Quick Tip for Families in Intensive Care! Quick Tip for Families in Intensive Care: What if My Loved One has a Poor Prognosis in ICU? What are the Options, is it Black and White?