Podcast: Play in new window | Download

Subscribe: Apple Podcasts | RSS

Quick Tip for Families in Intensive Care: My 58-Year-Old Dad is at Day 17 in ICU after Hemorrhagic Stroke. Does He Need a Tracheostomy?

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

So today, I have an email from Geetha who writes in,

“Hi Patrik,

I love your website and your YouTube channel. We live in the United States. My dad had a large ischemic stroke at 54 years of age four years ago. It left him right side paralysis and aphasic. His speech wasn’t affected, he was stable and regained his memory and was walking with a small cane and some assistance. His vision was affected, and he had balance issues, but he was ok engaging with daily life albeit with disabilities.

One month ago, at age of 58, he went into a focal seizure-like thing and the ER checked and then sent him home after 2 days saying no seizure or stroke. They didn’t do MRI or seizure test; they just did CT scan. After he came home, he was having severe balance issues. Then 2 weeks ago, he had a huge intracranial hemorrhage and he’s got a craniotomy done. We were told it was a large left cerebellum bleed. He is currently in ICU, Day 17 on pressure assisted ventilation with a central fever and on seizure medications as well. His body is stable. He is off sedation for about a week.

I have been reading your blog and the question/situation is but similar to Ashanti’s 91-year-old father. On Day 2 after surgery, he waved bye to us when we spoke to him in our native language. He made a small left-hand movement and left foot shake. The nurses feel it’s random and he is not responding to them when they ask in English. Then, the central fevers came, and he was shivering and shaking, and he was put on seizure medications, but they found no seizures.

A few days later, they called the speech therapist because he was answering a few questions right like with his eyes like “Is Obama the current president?” The next day or so, they sent palliative care to talk to us, which we refused. They want to send him to an LTAC (long term acute care facility) after a tracheostomy and the PEG (Percutaneous Endoscopic Gastrostomy) on Monday.

 My dad is looking around when we talk to him, and we feel he is there mentally in a minimally conscious state because he is trying to move his left thumb to say bye when we ask him a few times, but the nurses feel like we are thinking too much.

There is no speech therapy anymore. No mobilization as well. We asked if he has any bed sores, and the nurses say none. He still has fevers on and off. He was doing good on spontaneous breathing trials 3 hours. Then suddenly, after we agreed for a tracheostomy and the PEG, the nurses started saying he’s failing the breathing tests and that’s why he will get a tracheostomy and the PEG. Not sure if it’s on purpose or for insurance reasons or not.

We are confused what’s going on. The nurses are feeling like we are bothering them when we ask about his progress. I asked them to check with the neurology doctor on putting him on neurology stimulants to get him conscious.

Let me know how to proceed. We feel like it’s too early to give up on him. We are on Medicare insurance, so it covers 100% for 60 days of ICU. We don’t want to go to LTAC if we can avoid it. We are interested in DOC programs and neuro rehab once he is on room oxygen.

Thank you so much.

From, Geetha.”

Now, DOC program stands for Disorders of Consciousness Program. Now, let’s break this down for you. So first off, you need to get access to the medical records, or you need to have an advocate like me to talk to the doctors and nurses there directly. If he was spontaneously breathing, I cannot tell you whether it was on purpose, or he simply could no longer breathe spontaneously. I couldn’t tell you that without either looking at the medical records or talk to a doctor or a nurse directly there.

Intensive care is such a highly specialized area that you can really only put the pieces of the complex puzzle together if you’ve worked there for decades like I had. I have worked in intensive care and critical care for nearly 25 years in three different countries where I also worked as a nurse manager for over 5 years. I’ve been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com.

I can say without a hint of exaggeration that we have saved many, many lives in intensive care and improve the outcomes of many of our clients because of our professional consulting and advocacy. You can verify that by looking at our testimonial section or by going to our podcast section and listening to some client interviews as well.

So, should they have a tracheostomy and a PEG? Well, if he passed the spontaneous breathing trial a few days ago, why is he no longer passing those spontaneous breathing trials? I mean, half of your problems will be gone, and your dad’s problems will be gone once he’s extubated, and he won’t need a tracheostomy and he can have the breathing tube removed.

If for whatever reason, he cannot be extubated, i.e., have the breathing tube removed, then the tracheostomy is definitely the right thing to do. A PEG is not the right thing to do. I have made many, many videos why a PEG tube is not the right thing to do in a situation like that. Go to our website intensivcarehotline.com and type in “PEG tube”. There’re countless videos why you should not proceed with the PEG tube in your dad’s situation.

Now also, Medicare, generally speaking, only pays for 60 days of ICU but only if there’s no longer a medical reason. So, I argue that if he still can be weaned off the ventilator and can avoid the tracheostomy, then he should stay there. Having said that, if it’s Day 17 in ICU and he hasn’t had a tracheostomy and he is unable to come off the ventilator  he will need a tracheostomy but like I said, no PEG.

Aso, if he’s not getting mobilized, it will be difficult for him to be weaned off the ventilator. If he’s not getting physical therapy, if they don’t continue with the weaning and the spontaneous breathing trials, he will have a hard time.

But once again, 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 is one of the many challenges you are facing here.

Why does he have fevers on and off? Does he have fevers because he’s got an infection? Have they done a sputum sample from the secretions from the lungs? Have they done a urine culture? Have they done a blood test to check the blood culture? Or is the fever coming from the stroke? Is it something that he can no longer control? Can he no longer control his body temperature as part of the hemorrhagic stroke?

Now, if you think like your dad is waking up and he is doing those little things that you are so wonderfully describing in your email, well, you know your dad best. You know in your gut whether he’s trying to communicate with you or not.

Also, without mobilization, without speech therapy, if they’re trying to wind that down because they want to get you to LTAC, you should intervene there by writing an email to the hospital CEO and make a complaint. Don’t take no for an answer. Like I mentioned before, part of our consulting and advocacy is helping you with this. Once you have access to the medical records, we can give you a second opinion. Once I have spoken to the doctors and nurses, I can give you a second opinion.

You need to take responsibility for what’s happening and also for what’s not happening. If he’s not getting mobilized, you need to put the pressure on and you need to take responsibility for getting outcomes. That’s half of the battle. Don’t wish or pray. Make things happen and we will help you with that.

Is it too early to give up on him? Oh, absolutely. It’s never too late to do things and I believe it’s always too early to give up. DOC programs and neuro rehab, once he’s extubated and has the breathing tube removed, is absolutely the next step by the sounds of things. But your first goal here is to get him extubated as quickly as possible and if that can’t be achieved for whatever reason, yes, he will need a tracheostomy for sure. But even then, you should not go to LTAC. You should be weaned off in ICU. They know what to do, but it’s easier for them to send patients to LTAC just be mindful there.

But once again, we have helped so many families in intensive care to have their loved ones not to go to LTAC and stay in ICU, just through our consulting advocacy and knowing how the system works, pulling the right levers.

So, that is my quick tip for today.

Because we get so many emails and phone calls and questions and YouTube comments from families in intensive care, that’s why we created the membership for families of critically ill patients in intensive care. You can have access to our membership if you go to intensivecarehotline.com, you can click on the membership link or 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.

I also offer one-on-one consulting and advocacy  over the phone, Skype, Zoom, WhatsApp, whichever medium works best for you. I talk to you and your families directly and I talk to doctors and nurses directly as well. All of that I do to making sure you make informed decisions, you have peace of mind, control, power, and influence.

I also represent you in family meetings with intensive care team so that, once again, you have representation in a family meeting from a clinician that makes sure that your loved one gets best care and treatment and that you make informed decisions, you have peace of mind, control, power, and influence. 99% of families in intensive care have absolutely none of that, and that’s what I’m here to help you to do and help you to have.

We also offer medical record reviews in real time so that you can get a second opinion in real time. We also offer medical record reviews after intensive care if you have unanswered questions, if you need closure, or if you are simply 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 simply send us an email to [email protected].

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 and what questions and insights you have from these videos, and share the video with your friends and families.

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.