My name is Patrik Hutzel from intensivecarehotline.com, with another quick tip for families in intensive care. At intensivecarehotline.com, we improve the lives of families of critically ill patients in intensive care instantly so that you can make informed decisions, have peace of mind, control, power, and influence, make sure your loved one always gets the best care and treatment, even if you’re not a doctor or a nurse in intensive care.

So, if you’re the partner, family member, parent, child, or anyone who has a loved one critically ill in ICU and on a ventilator and you feel lost, scared, and like you’re not getting straight answers, you’ve come to the right place.

Today, I’m responding to a real comment from Amber Huck, who left this message on one of my videos about ventilators and tracheostomies on my YouTube channel. And Amber, if you’re watching this, this video is for you and for every family in a similar situation right now. If this video helps you, subscribe to my YouTube channel, like the video, put on the notification bell, and share the video with anyone who has a family member in intensive care.

I post new videos every week to help ICU families navigate the most overwhelming experience of their lives, and go to intensivecarehotline.com for more resources, articles, and to book a call with me or one of my team members.  So let me read Amber’s comments so we’re all on the same page. Amber wrote,

“Hi Patrik, 

My fiancé got sent to another place. I feel worse for him, actually. Before he got transferred, he was breathing on his own, but very weak from not being out of bed. He was healthy before going in. He was having trouble breathing when he first went into the ICU. We thought he had the flu, but it was an infection in his heart. His mom had them wait a week with a tube down his throat before doing surgery. The surgery went well. He was under for two weeks, then they had the tube sealed down his throat before choosing the tracheostomy. He was super swollen. He still isn’t able to get out of bed. He’s pooping in the bed. He’s been on anxiety medications. He’s not himself. I feel he’s at a worse place right now than he was before. I know for a fact they didn’t do a swallow study. Now he has fluids on his lungs. I am lost. I don’t know what to do. He’s not doing well. Still stuck in the bed.”

Amber, first of all, I want to acknowledge how incredibly stressful and heartbreaking this must be for you. Your fiancé went into the hospital relatively healthy. He had heart surgery, and now weeks later, he’s still on a tracheostomy. He can’t get out of bed, has fluids on his lungs, and he has been transferred to a new facility or hospital. This is an enormous amount to deal with for both of you.

But let me break down for you what’s happening clinically, what your rights are, and what actions you need to take right now. Let’s go through the key issues one by one.

Number one, he has a heart infection, either endocarditis or myocarditis or something similar, requiring surgery. A heart infection, likely infective endocarditis or myocarditis, is a serious, life-threatening condition. The fact that he needed open-heart surgery means this was severe. After major cardiac surgery, the body takes a long time to recover. Add the ventilator, the tracheostomy, the sedation, the deconditioning from weeks lying in bed, and you’re looking at a very complex recovery.

Number two, tracheostomy, why and what it means. A tracheostomy or as you put it, a trach, is placed when a patient needs prolonged ventilator support, typically after 10 to 14 days on an endotracheal tube, also known as a breathing tube.  It’s basically the tube down your throat. In your fiancé’s case, he had the tube for several weeks before the tracheostomy was placed. A tracheostomy is generally speaking more comfortable and allows for weaning from the ventilator. But the fact that he still needs the tracheostomy means the team has not yet been able to fully wean him off ventilation support. This is a critical question you need to ask the ICU team. What is the weaning plan? What is stopping him from coming off the ventilator?

Number three, no swallow study was done. This is a major concern. A swallow study, formally called a video fluoroscopic swallowing study or a fiber optic endoscopic evaluation of swallowing, also known as FEES, assesses whether a patient can safely swallow without food or liquid going into the lungs, also known as aspiration. After prolonged intubation, the muscles for swallowing can weaken significantly. If your fiancé has fluids on his lungs for whatever reason, which we call pulmonary edema or possibly aspiration pneumonia, one possible cause is aspiration of secretions or fluids because no swallow study was done to identify the problem. You need to demand a swallow study as the next step.

Number four, fluids on the lungs. Fluids on the lungs can mean several things. Pulmonary edema, which means fluid from heart failure. Pleural effusion, fluids around the lungs. Aspiration pneumonia as just mentioned, fluid food inhaled into the lungs. Given his heart condition, all of these are possible. The team needs to identify the cause of the fluids and treat accordingly. This might mean diuretics such as Lasix, furosemide, Bumex, spironolactone to remove fluids, drainage of pleural effusions or antibiotics for pneumonia. You need to ask what is causing the fluids on the lungs? What is the treatment plan? Is he improving or deteriorating?

Number five, ICU acquired weakness and deconditioning. The fact that he can’t get out of bed is not surprising, but it is a problem that needs to be actively addressed. ICU acquired weakness is real. Weeks of bed rest, sedation, illness, and ventilator dependence cause massive muscle loss. He needs an aggressive physiotherapy and rehabilitation program every single day. If the new facility or ICU is not mobilizing him, you need to raise this urgently. The whole purpose of a tracheostomy is to minimize sedation, minimize opiates, and start mobilization and rehabilitation, and so many hospitals and ICUs are falling short on that. They’re not delivering on the promise of the tracheostomy.

Once again, let me repeat that because it’s so important. Minimize or stop sedation and opiates, start mobilizing. The only contraindication to that would be hemodynamic instability. Some patients might be on inotropes or vasopressors, or patients have fractures, await surgery, but other than that, there should be nothing stopping your family member from getting out of bed and starting rehabilitation and mobilization.

Number six, anxiety medication and his mental state. It’s completely expected that he’s on anxiety medication. Being in the ICU for weeks, unable to breathe on his own, unable to move, unable to communicate clearly, that is deeply traumatizing. But here’s the issue. Some sedatives and anxiolytics can slow recovery, they can reduce his drive to breathe, reduce his ability to participate in physiotherapy, and affect his cognition. You need to ask, is his anxiety medication necessary? Is it at the lowest possible dose? Are there non-pharmacological strategies being used like better communication, familiar faces, familiar music, reorientation?

Also, like I said, he might be on opiates such as morphine or fentanyl, which are strong pain medications, but why is he on them? Is he actually in pain? Right?

Next, what do you need to do right now, Amber? Here are the concrete steps, Amber, you need to take immediately.

Step one, get access to all medical records.

immediately. And this is absolutely crucial. You need access to all of your fiancé’s medical records ASAP from the first hospital and the new hospital. This includes admission notes, surgical reports, nursing notes, doctor’s notes, medication charts, ventilator settings, fluid balance charts, blood results, imaging reports such as x-rays, CT scans, and the ICU daily progress notes from doctors and nurses. In most countries, you have a legal right to access these records immediately, either as next of kin or as his nominated healthcare proxy. Without the records, you’re flying blind. With the records, you or an expert like my team can independently assess what has happened and what should happen next.

Number two, or step two, request an urgent family meeting with the ICU team. You need to sit down with the intensivist ICU specialist doctor, the ICU nurse in charge, the physiotherapist, the social worker, and come prepared with questions. Don’t accept vague answers. Ask what is the plan to wean him off the ventilator? Why has no swallow study been done? What is causing the fluids on his lungs and how are you treating it? What is the daily rehabilitation plan? When is he getting mobilized daily? Is he improving or deteriorating? What is your prognosis for him? Is he still suffering from the heart infection, i.e., endocarditis or myocarditis?

Step three, Amber, and anyone watching this in a similar situation, this is exactly what we do at Intensive Care Hotline. Me and my team provide one-on-one consulting calls where we review the medical records, help you understand exactly what’s happening with your loved one, prepare you for family meetings, help you ask the right questions, and advocate for your loved one. We also speak directly with the ICU team on your behalf and with you, and that will change the dynamics immediately. Doctors and nurses respond differently when they know a senior ICU nurse is on the call, asking detailed clinical questions. There’s no place for them to hide.

Visit intensivecarehotline.com to book a consulting call with me or call us on one of the numbers at the top of our website. We have helped thousands of families in intensive care worldwide, families who felt exactly as lost as you do right now.

Next, here are the specific treatment options the ICU team should be considering for your fiancé, Amber, and that you should be asking about if they’re not already happening.

Number one, ventilator weaning trials. Is the team doing daily spontaneous breathing trials? Is he on pressure support, and are they gradually reducing it? What is the target?

Next, a swallow study must be done urgently, especially given the fluids on the lungs. Request a speech therapist’s review today. Treatment for fluids on the lungs, whether it’s diuretics, drainage, or antibiotics, a clear treatment plan with measurable targets needs to be in place, such as, does he need a chest drain for his pleural effusion, if he does have a pleural effusion.

Next, aggressive physiotherapy and rehabilitation, sitting out of bed, standing with assistance, and passive and active limb exercises daily. If this is not happening, escalate urgently.

Next, nutrition optimization. Is he getting adequate nutrition, enteral tube feeding, or oral nutrition if the swallow study allows? Protein intake is critical for muscle recovery.

Cardiac follow-up. Is the original heart infection fully treated? Has the surgical repair been assessed with an echocardiogram, also known as an ultrasound, post-op? Is his heart function adequate to support weaning off the ventilator?

Let’s also come back to weaning off the ventilator again. What ventilator settings is he on? Is he still in a controlled ventilation mode such as SIMV or ACV? Are they reducing the respiratory rate? Can they swap him from a controlled ventilation mode, such as SIMV or ACV over to pressure support or CPAP? Are they doing arterial blood gases to monitor progress?

But I also want to address something that many families in Amber’s situation need to hear, even if they’re not ready to hear it. Some patients, despite the best care, cannot be fully weaned from ventilation support or from the tracheostomy.  This may mean long-term invasive ventilation through a tracheostomy or long-term non-invasive ventilation such as BiPAP or CPAP, if the tracheostomy can be removed, but your loved one still may need some form of ventilation. If this is the situation for your fiancé, that doesn’t mean he has to live in an ICU or a nursing facility for the rest of his life.

And this is what I’m saying next is also applicable if your fiancé or anyone watching this, your family member can be weaned off the ventilator but still needs a tracheostomy long-term.

At intensivecareathome.com, our sister service, we specialize in bringing ventilator dependent and tracheostomy dependent and complex care patients home from intensive care. We help families and their loved ones transition from ICU to living at home with professional 24-hour critical care nursing support and ventilation and tracheostomy management. Home care has been proven to improve quality of life, reduce hospital-acquired infections, improve psychological well-being, and reduce the cost of an ICU bed by 50 percent compared to long-term ICU.

Whether your loved one needs invasive ventilation with tracheostomy, non-invasive ventilation with a mask such as BiPAP or CPAP, or needs a tracheostomy without ventilation, or whether you’re exploring palliative care options at home, at Intensive Care at Home, we help. Visit our website at intensivecareathome.com. You can read our resources there and reach out to our team there. You don’t have to choose between ICU and a nursing home. There’s a third option, which is Intensive Care at Home

And Amber, I hope this video has helped you understand what is happening with your fiancé and given you a clear path forward. You are not powerless in this situation. You have rights, you can get medical records, you can ask hard questions, and me and my team can ask the hard questions for you. You can get expert support and you can advocate for your fiancé.

And if you’re watching this and you’re in a similar situation, please leave your questions in the comments below. I read every single one of them, and if you’d like personalized support, go to intensivecarehotline.com to book a one-on-one consulting call with me or my team. We’re here for you seven days a week.

Please subscribe to my YouTube channel if you found this helpful. And also subscribe to our very informative email newsletter at intensivecarehotline.com, where we send out case studies every day. It’s the best way to make sure you don’t miss any future videos that can help make a real difference for you and your family and your loved one. And give this video a thumbs up if it helped you and share it with anyone who needs it right now.

Until next time, this is Patrik Hutzel from Intensive Care Hotline. Take care of yourself and take care of your loved one.

I have worked in critical care nursing for 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. And I can very confidently say that we have saved many lives with our consulting and advocacy, because of our insights, and you can verify that on our testimonial section at intensivecarehotline.com and you can verify it on our intensivecarehotline.com podcast section, where we have done client interviews.

And because our advice is absolutely life-changing, right? 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. And 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 the best care and treatment always. And 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.

And 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 simply cannot afford to get wrong. And 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, so, if, in case you have unanswered questions, if you need closure or if you are suspecting medical negligence.

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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.