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Quick Tip for Families in Intensive Care: My 32-Year-Old Brother (Down Syndrome) in ICU Intubated After Cardiac Arrest & Hypoxic Brain Injury!

Currently, we’re working with a client who has their 30-year-old brother and son in ICU ventilated with Down Syndrome, as well as supposedly hypoxic brain injury after cardiac arrest.

My name is Patrik Hutzel from intensivecarehotline.com, and this is another quick tip for families in intensive care.

Currently, we’re working with a client and member who has their 32-year-old brother and son in the ICU with Down Syndrome. He’s a non-verbal patient. He’s got a history of hypothyroidism and gout. He’s obese, and he had a cardiac arrest at home. He was at home with his family. He was found in acute respiratory distress, and oxygen saturation was about 50% on room air when the ambulance arrived. The ambulance noted copious secretions and agitation.

They gave 5 mg of haloperidol for behavior and placed on 15 L of a non-rebreather mask whilst they were on their way to the Emergency Department. Upon arrival to the Emergency Department, he became tachypneic meaning he was breathing really fast. Oxygen saturations were between 70 to 80%, with worsening respiratory efforts. Then there was a plan for BiPAP (Bilevel Positive Airway Pressure) and ketamine. The patient ended up in bradycardia, which is a really low heart rate, and had a cardiac arrest. A PEA (Pulseless Electrical Activity) arrest occurred in the afternoon. CPR (cardiopulmonary resuscitation) was initiated.

Return of spontaneous circulation was achieved within 12 minutes of low-flow CPR. The client was intubated, started on vasopressors for low blood pressure, and sedation. Initially, in the emergency room, they found he has pneumonia. Pasteurella multocida isolated from the sputum culture. White cell count was 20.9, which indicates he’s got an infection. Lactic acid was normal, early septic shock, transferred to ICU within a few hours where he remained intubated, sedated, and paralyzed. Treated for multifocal pneumonia and ARDS. ARDS stands for Acute Respiratory Distress Syndrome. It’s also commonly known as lung failure.

He then had an EEG, which showed severe generalized slowing with burst suppression, increasing suppression over time, no seizures, suggesting profound cerebral dysfunction. EEG (electroencephalograph) basically checks the electrical activity of the brain.

The next day, a chest X-ray was done, and it shows bilateral infiltrates consistent with ARDS/lung failure. An attempt was made to evaluate for neurological infection began due to persistent fever and suppressed EEG. The patient came off paralytics and sedation and still showed no purposeful movement, no gag reflex, and minimal brain stem reflexes.

MRI scan was done on the next day, which showed extensive cortical and subcortical damage, diffusion abnormalities, and cerebellar involvement. Diagnosis is severe hypoxic ischemic brain injury. On the same day, the Neurology Team and ICU team had a meeting with the family and explained, “poor prognosis”, and supposedly not a candidate for neurorehabilitation due to lack of responsiveness. Family opts to continue free medical therapy and time limited trials.

Two days later, patient remains intubated, ventilator switched to Pressure Control mode on 60% of fiO2 oxygen delivery from the ventilator. He’s on a PEEP of 10 and the Pressure Control of 20, which is quite high levels of ventilation support. The arterial blood gases had improved to a PO2 of 210, with a pH of 7.44. White cell has been trending down but is still elevated at 25.4. And he’s likely reactive to the antibiotic therapy. Still, what ICU describes as no meaningful neurological response.

Strong corneal reflex. No gag reflex, no longer sedated, and neurologically minimally reactive. Now, the current diagnosis is a severe anoxic brain injury post PEA arrest after 12 minutes low flow CPR, acute hypoxemic respiratory failure secondary to ARDS from multifocal pneumonia, septic shock, which is now resolved, ventilator dependence with now FiO2 of 60% oxygen delivered from the ventilator, PEEP (Positive End Expiratory Pressure) of 10 in Pressure Control mode. Suspected also ventilator associated pneumonia, no positive sputum culture, hypernatremia now improving with fluid resuscitation, steroid induced hyperglycemia now on insulin drip. And he’s got diarrhea non-C. diff, and that is being treated with Gastro Stop.

Pending and key points, awaiting lumbar puncture to evaluate for CNS (Central Nervous System) infection, continuing empiric coverage, ceftriaxone, ampicillin, vancomycin, acyclovir to cover the infections. MRI and EEG are both consistent with profound hypoxic injury, not reversible, that’s what ICU says. Ventilator changes made due to worsening pulmonary edema. Still no signs of what the ICU describes as meaningful neurological recovery, though cornea and cough reflexes persist.

Ventilator snapshot again, it’s in a Controlled Mandatory Ventilation mode with a rate of 18, Tidal Volume of 300, PEEP 14, fiO2 of 40% now. CO2 (carbon dioxide) is sitting around 40 millimeters of mercury, and peak pressures are around 27 with adequate arterial blood gases. Vital signs are stable off inotropes and vasopressors.

By showing some body reflexes lately, some eye movement like blinking tears, the team had a meeting with the family again, and they’re kind of saying this is it for him. This is obviously not the family paraphrasing and summarizing the meeting they had with the family, saying this is it for him, referring to their brother and son, and they’re hinting on discontinued life support.

I hope you can help me guide through this.

I told them absolutely not right now; we’re going to give him more time. And absolutely, that is what you should be doing. It’s only been a few days. And you need to give, with hypoxic brain injury, you need to give patience with hypoxic brain injury in ICU, you need to give them time.

The first step here is to make sure your brother and son can leave ICU alive. And once that’s been achieved, then you can look at recovery. And also, if you then, if things are not progressing as you want them to progress, there is plenty of time to talk about end of life.

This is what I never understand that ICUs are so rushed to end people’s life. And that is inappropriate. It is up to families what they want for their loved ones, or it is up to patients, of course, if they have an advanced care directive. In the absence of an advanced care directive, it is entirely up to families to share their wishes.

And what you need to do here is really play on time. Let your brother get a tracheostomy if he’s not waking up and if he’s not progressing from a ventilation point of view, because over time, a tracheostomy will give him time to wake up. There’s no guarantee he will wake up. But there is a guarantee that if they stop life support, that he will die, right? That is the guarantee.

Now, by continuing life support, you give him a chance of getting him back to baseline. Maybe he will not get back to baseline, but maybe he can live a quality of life that is acceptable to him, that is acceptable to you and your family. Life is sacred. And time will tell everything that you want to know, whether your brother will wake up or not. Time will tell you everything you need to know. And the ICU team doesn’t want to give you the time because they’re pressured for beds, they’re pressured for resources, they’re pressured for staff.

I’ve worked in intensive care nursing in three different countries for over 25 years. I do understand intensive care units, how they operate inside out. And they also want to stay in control and want to make a decision who lives and who dies. And that is highly inappropriate, as far as I’m concerned.

Also keep in mind, he’s only been off sedation and opiates and paralytics for a few days. It is very early days to assess whether he can, or he can’t wake up. Keep in mind, there’s plenty of patients in ICU that don’t have a brain injury, that come off sedation, opiates and paralytics, and don’t wake up straight away.

Also, another good sign here is he doesn’t have any seizure activities, that is actually a good sign. A lot of patients that I looked after in ICU after cardiac arrest and a lot of clients that we’ve dealt with over the years at intensivecarehotline.com after hypoxic brain injury, most patients have seizures. And that is not the case here. I would give this some time, as much time as you would like.

It is not up to ICU teams to decide when and how your brother should end his life. It is up to you to keep advocating for him, which is what we are here to help you with. And they already know they can’t just make that decision, and they can’t just tell you, oh, tomorrow at 3 o’clock, we are ending your brother’s life. That is highly inappropriate. It’s illegal in most jurisdictions. And you should keep advocating for that.

And there’s plenty of time to talk about end of life. The question that you always need to ask is, where is the urgency to kill someone in intensive care? Where’s the urgency? Why is there no urgency to get your brother a tracheostomy and see whether he can recover? Start to get him mobilized once he’s hemodynamically stable, once he shows no sign of infection any longer, then it’s time to start him getting mobilized. That is a very different conversation to have as opposed to ending your brother’s life. It is a very different conversation to have.

And also, after about two weeks of mechanical ventilation in the ICU with a breathing tube, it’s time to do a tracheostomy assuming your brother can’t be weaned off the ventilator, if he’s not waking up. Once again, that’s what a tracheostomy does. It’s buying people time, it’s giving them a chance to recover, assuming all the right things are being done, i.e., starting to mobilize patients, making sure they get physical therapy, making sure they’re getting mobilized, and they have a fair chance at recovery.

And it’s also interesting that as part of the family’s and our client’s discussion with the intensive care team, they want to have a follow up meeting with the neurologist, and they keep asking the family why, as if the family is an inconvenience when they’re asking for meetings. Again, that’s highly inappropriate.

And they’re also saying now they don’t want to do a spinal tap or a lumbar puncture because of perceived complications when they turn him over. Look, the reality is this. Whenever there’s a procedure happening in ICU, whether it’s a lumbar puncture, whether it’s any type of procedure, surgery, minor surgery, whatever it is, there’s always a risk of complications, always.

The reality is that if they don’t do anything, the highest risk here is this gentleman will die. That’s unfortunately how some, not all, ICUs are operating. There’s a lot of good things happening in ICU. But obviously, we are dealing with our clients here, they come to us because they are often at their wit’s end. And that’s what we’re here to help them for and how to advocate, and we advocate on their behalf.

Your job is to avoid the worst-case scenario and give your brother the best chance at life. And if you’re asking for a meeting, that is perfectly reasonable. Always bring it back to what’s reasonable. Always trust your gut and keep advocating. And if none of it works, my suggestion is that you go to a hospital executive, that you take the complaint outside of ICU, and you will find that hospital executives often will help because they have to.

So, I hope that explains the situation to you.

I have worked in critical care nursing for over 25 years in three different countries, where I worked as a nurse manager for over five years in intensive care. And 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 for our clients in intensive care.

And you can verify that on our testimonial section at intensivecarehotline.com or you can verify it on our intensivecarehotline.com podcast section where we have done client interviews. And there our clients tell you how we help them to save their loved ones’ lives because our advice is absolutely life changing.

The biggest challenge for families in intensive care is 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. They don’t know how to manage doctors and nurses in intensive care. And that is a big challenge to deal with. But that’s what we are here to help you with step by step because we’re getting results and outcomes for our clients.

We help our clients to improve their lives instantly, so they make informed decisions, have peace of mind, control, power, and influence making sure the loved ones get the best care and treatment always. And you can join a growing number of members and clients that we have helped over the years to improve their lives instantly, making sure their loved ones get the best care and treatment always.

That’s why I do one-on-one consulting and advocacy over the phone, Zoom, WhatsApp, whichever medium works best for you. And I talk to you and your families directly. I handhold you through this once-in-a-lifetime situation that you can simply not afford to get wrong. I also talk to doctors and nurses directly with you, on your behalf, or I’ll set you up with the right questions to ask. When I talk to them 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. And you will see the dynamics change in your favor very quickly. 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 you have unanswered questions, if you need closure, or if you are suspecting medical negligence.

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

Take care for now.