Podcast: Play in new window | Download

Subscribe: Apple Podcasts | RSS

Quick Tip for Families in Intensive Care: Mom Hasn’t Woken Up for Months After Brain Bleed! She’s In & Out of the ICU on Ventilation & Tracheostomy!

Hi, it’s Patrik Hutzel from intensivecarehotline.com with another quick tip for families in intensive care. Before I answer another question today from one of our readers. 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 questions and insights you have or what you want to see next.

Let’s get right into the question who is from Chelsea who says,

Hi Patrik,

My mom had a fall and hurt her head. She had surgery to drain the blood in the brain since she had internal bleeding. So she passed out for a while. Then right before the ambulance took her, we were kind of talking to her and she was responding.

After the brain surgery, they put her in an induced coma for two weeks and they said to give her a few more days to wake up but she didn’t because by then they had put her to sleep again because she needed a ventilator on her neck. Then they said to give her another few days. Then again, they put her to sleep because they needed to put a feeding tube through her stomach.

So again, they said to give her a few days, she’s been in and out of the hospital from a senior therapy home where they supposedly have her recovering. She ended up in the hospital because her sodium was low or she had kidney failure.

Then another time she developed pneumonia, it’s been since June the 2nd and she still hasn’t woken up. I mean, I know at this point she’s in an actual coma. But my question is if she was being responsive after the injury, then she had the surgery and placed in an induced coma, what could have gone wrong? Shouldn’t the doctor know why she’s not waking up? When we ask all they say it’s up to God now for her to wake up, I would think they would be able to see what’s going on. But I don’t know. Has anyone gone through this and what’s the outcome?

Thank you, Chelsea for your question. I’m very sorry to hear what’s happened to your mom.

Now, here’s the thing, along the way here, I’m surprised you haven’t mentioned that ICU or the hospital didn’t want to stop treatment. So that’s a good thing. I’m pretty sure they would have told you that if they thought it was hopeless that, they might have wanted to push you towards the end of life but it doesn’t sound to me like that’s the case. So the question here is, how good is her rehabilitation?

By me, the time of this recording of the video, it’s January 2024. This actually happened in June last year. So we’re talking about nine months ago. Some people don’t wake up for months on end. But the question also is, what’s the quality of her rehabilitation? Is she getting mobilized? Is she getting out of bed every day? Is she getting good nursing care? Is she having a shower every day? Is she being stimulated? So, is she still on sedatives? Are they giving her stuff to help her sleep at night? What ventilation settings is she on?

So she does have a tracheostomy by the sounds of things and she does have a PEG (Percutaneous Endoscopic Gastrostomy) tube. My concern there is, with people going from ICU to sounds like to me is to LTAC (Long Term Acute Care) or to sort of subacute or skilled nursing facilities, the level of rehabilitation there is not great, which is why your mom is also bouncing back to ICU all the time. I’m not surprised there for a minute.

My advice would have been a few months ago, if you had contacted me, my advice would have been to stay in the hospital for as long as possible because those places that she’s going to, they can’t look after a ventilator and the tracheostomy and the PEG.  You got to keep this in mind when someone is on a ventilator with a tracheostomy and the PEG, it requires the skill of a critical care nurse.  Nothing less than that.

So no surprises that your mom bounces back into ICU not only because of the high sodium. That also means they can’t manage your fluid balance. Well, once again, what level of care is she getting? What’s the skill level there? Probably not very high, which is why we’re always saying that a ventilated patient with a tracheostomy, they need critical care nurses 24-hours a day and need a service like Intensive Care at Home. And you can find more information about Intensive Care at Home, at intensivecareathome.com. 

When someone is in such a precarious situation, it’s not only that the rehabilitation needs to be on point. It often can’t be on point in a situation like that because people don’t know how to look after a ventilator. They don’t know how to look after a tracheostomy. They don’t know how to manage feeds and fluid intake or fluid output, which is probably why your mom’s sodium is out of range.

It’s very delicate looking after someone like your mom who has multiple clinical complex issues. Very, very difficult to look after your mom. And she shouldn’t be just sent to rehab or to a nursing home and no one really knows what they’re doing, let alone how to rehabilitate your mom. So a lot of it comes down to, what is their focus at the moment? Is their focus, her neurological recovery or is their focus the ventilator and the tracheostomy. Both should be the focus, but both need expert and specialist input, which it doesn’t sound to me like your mom has at the moment. And that would be my recommendation, my suggestion that she needs to get out of bed every day.

She needs stimulation, positive stimulation, right? Of course, very positive stimulation. and she will need time, you never know if people can wake up or they can’t wake up. Until you try how long we don’t know, we don’t know. But you could argue, you’ll wait and you’ll try until. For anyone who has a child, if you have in your own mind. By when should my child walk? Ok. 12 to 15 months, I think that’s an accepted time frame. And what if your child doesn’t walk after 15 months? What do you do? Give up? Say my child will never walk. You just keep trying and your child keeps trying and it’ll be the same with your mom here. As long as there’s movement and progress will you give up? That’s the question here.

And like I said, have a look at services like Intensive Care at Home. Have a look at intensivecareathome.com on the website because Intensive Care at Home can help you get your mom home and rehabilitate and recover her in a much more patient and family-friendly environment.  

With Intensive Care at Home, we’re currently operating all around Australia but also privately in the U.S. and the U.K. So please reach out to us one way or another, whether you’re in Australia, in the U.S. or in the U.K., if you’re interested in Intensive Care at Home. 

Now, we have a membership for families of critically ill patients in intensive care at intensivecarehotline.com. If you go and click on the membership link or if you go to intensivecaresupport.org directly. Now 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 and we also review medical records in the membership.

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 to your families directly. I talk to doctors and nurses directly. And I ask all the questions that you haven’t even considered asking, but you must ask so that you can make informed decisions, and have peace of mind, control, power and influence. It will make all the difference when you and I talk to the doctors and nurses directly, then they realize they can no longer hide and you have someone on your team that understand intensive care inside out just as much as they do.

I also represent you in family meetings with intensive care teams making sure (A) you’ve got clinical representation, but (B) also making sure whether you should even go to a family meeting with intensive care teams. You need to have a strategy. When you go into a family meeting without a strategy, you will be fighting an uphill battle.

And by the way, I have worked in intensive care and critical care for over 20 years in three different countries where I also worked as a nurse unit manager for over five years. I have been consulting and advocating for families all around the world in intensive care since 2013. You can have a look at our testimony section and our podcast section where we have done some client interviews as well.

We also offer medical record reviews in real time so that you can have 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 and all of that you get at intensivecarehotline.com. Call us on one of the numbers on the top of our website or send me an email to [email protected]. 

If you like my video, 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.

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.