Podcast: Play in new window | Download

Subscribe: Apple Podcasts | RSS

Quick Tip for Families in Intensive Care: My Mother’s Been Going from ICU to LTAC (Long-Term Acute Care) Back to ICU & Now They Want Her Back in LTAC, Can I Stop It?

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

So, today I have an email from Dawn who describes her mom’s situation going from ICU to LTAC (long term acute care) and vice versa, and it’s just a good illustration what some families are dealing with and it’s just very unfortunate, but I think it’s a really good illustration.

This is actually an email from last year, at the time of me recording this video, it’s July 2024. But we’re getting so many emails, so I’m not getting to all of them quick enough, but I’m just reading out an excerpt from a very long email where Dawn’s mom is going between ICU and LTAC, what she experiences, and what should be done and how we help in those situations.

“So, my mom’s breathing improves, and we start the weaning process over again. Then we get news from the kidney specialist that nothing is wrong with her kidney, but something else is causing bleeding and disruptions in the kidney. They ran labs twice. We are getting no news if the antibiotics are working on the pneumonia, they said her white blood cell count isn’t rising, it should be fine. But they are weaning her with no humidity to the oxygen. We are giving suggestions to the doctors and it’s a big mess.”

Now, weaning on a ventilator should not be done without humidity at all especially with the tracheostomy, it’ll dry up, or air will dry up and blocks potentially the tracheostomy, makes the secretions hard to mobilize, making it more likely to get the pneumonia, get a tracheostomy blockage and so forth.

So, Dawn carries on, “Got a week and a half period at the end of November and beginning of December of showing her body was working. She slept great. She’s opening her bowels and she’s making urine a lot. And by the next week, everything slows down again.

She’s still opening her bowels, but her urine output has diminished. Then she starts swelling all over her body and she weighs way more than I have felt her way before. One day, she looked sweaty. I tell the nurses, and they don’t touch her. They say, ‘She doesn’t look sweaty to me.’

She then falls asleep, and she spends three days trying to open her eyes. I had to beg them to give her the urine culture test because I know she has a UTI (urinary tract infection). She is struggling to breathe, I had to beg them to put her on a BIPAP machine so she can sleep at night. They don’t up the oxygen, they just let her struggle to breathe with thick mucus.

Finally, the admissions and discharge nurses come and speak with me while my mom is on the phone. She tells me, ‘Well, she’s struggling on the ventilator at night and that’s why her blood gases aren’t good.’ I tell her, ‘Who told you she was on the ventilator at night? Because she’s not. We begged them to put her back on the BIPAP/bilevel positive airway pressure at least, she just looked at me.’

I told her, ‘How are you telling me things that you said she’s doing? And I’m telling you, because we are with her all of the time, day and night. She’s not on the ventilator.’ They say she needs to move around with the pneumonia, but physical therapy says she needs to have a baseline, so I’m doing her physical therapy.

When she returns to Saint David’s Hospital after two months after leaving, she’s now returning with acute kidney failure, pneumonia that is over 8 weeks old, an UTI, and issues with breathing.

She had to be put on dialysis. She has a thoracentesis procedure at the same time to put a Permacath in for dialysis. While at the LTAC, more than a few times, she starts to breathe more rapidly. It’s random times, but we notice it only happens with something physical.”

This whole notion that the family has to prompt the LTAC, that her mother should get on the BIPAP is no surprise to me because most LTACs are simply not equipped to look after someone on a ventilator with the tracheostomy. They just simply don’t have the skills regardless of what they say on their websites that they are specialized on it, that is certainly not our experience.

Then Dawn continues…

“At the regular hospital in ICU, the breathing is often, and she sweats, and she turns her color quite frequently. On Christmas morning, the heart rate and blood pressure drop and she codes. They performed CPR/cardiopulmonary resuscitation, and she gets a pulse after the second time round. She goes back to the same ICU of where she’s admitted for a stroke and not even a day after coding. Here comes the hospital representative and says, ‘What’s next?’ They give us a list of four LTACs in the Austin area. Two are Cornerstone, one Texas Neuro, and another is Luling which is an hour away from where we live.

Texas Neuro denied her twice on something about insurance and the second time, because the physician thinks she won’t get better. But I called and it’s about her insurance, I don’t know. Luling is too far away, and we will never leave her alone.

Now, they want to have a “family meeting” trying to force us to commit to a LTAC. We don’t want her going to another LTAC. There is no way these places should be opened at all. We need help fast and desperately.

I hope you can help us.

Thanks for your time.

– Dawn.”

Thank you, Dawn, for sharing another horror story out of LTAC. Unfortunately, those stories keep coming to us. Now, in short, your mom should have never gone to LTAC in the first place. That’s number 1. Now that you’re at crossroads again where they’re trying to force you to go to LTAC, well, the first thing is no one can force you to go to LTAC. She just had a cardiac arrest, they performed CPR and when you look at the rules and regulations in the United States, and I will attach a document to this video and also to the written version of this blog, then you will see that no one can force you to go to LTAC if your mom is ventilated, with tracheostomy, and dialysis in particular.

Hospitals are very good to pretend they can do whatever they want until you challenge them on that and challenging them you should, because then you will see that they often retract. They’re very good at saying, “Well, your mom needs to go to LTAC, and we’ll organize it for a transfer next week.” The minute you challenge that, it goes out of the window.

We have helped many, many families in intensive care to keep their loved ones where they are supposed to be and not where the hospital wants them to go because of finances and bed pressures and politics and all the rest of it. The insanity of it all is that many hospitals want to send patients to LTACs hours away from families and that is just plain and simply wrong.

But 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. Once again, that’s exactly what you are dealing with here, Dawn, but there’s help at hand.

Obviously, this is an email from last year and like I said, we’re getting so many emails here that we can barely keep up, but if you need help quick in a situation like that, it’s best to contact us at intensivecarehotline.com. Just call us on one of the numbers on the top of our website or send us an email to [email protected].

It’s really important that when you have a loved one in intensive care that you strategize and think more than two steps ahead of the intensive care team. If you don’t do that, you’re fighting an uphill battle. And that’s when things like that happen where ICUs push you or your family member out to LTAC and it can be avoided. You can read up our testimonial section at intensivecarehotline.com.

We’ve helped so many families achieve their goals, save lives, keep them in the right places with our advocacy because what needs to happen in a situation like that, we look at medical records and we make the clinical argument and say, “Well, this is why this person can’t go to LTAC, they will bounce back,” which is exactly what’s happened here with Dawn and happened with many other families in intensive care and in LTAC in the United States.

So, because I worked in critical care for nearly 25 years in three different countries where I also worked as a nurse manager for over 5 years, like I said, we’ve been consulting and advocating for families in intensive care all around the world here at intensivecarehotline.com, that’s why we also created a membership families of critically ill patients in intensive care and you can become a member if you go to intensivecarehotline.com and go to the membership link, click on the membership link or 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.

You also have exclusive access to 21 eBooks and 21 videos that I have personally written and recorded, sharing all my past experience in critical care and intensive care making sure you make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets best care and treatment while they are in critical care.

Like I said, you can look up our testimonial section and see what our clients say, and you can also look up our podcast section at intensivecarehotline.com and you can listen to some client interviews, what they say. We have saved many lives with our consulting and advocacy. I can say that without any exaggeration at all.

I also do one-on-one consulting and advocacy over the phone, Skype, WhatsApp, Zoom, 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 can’t afford to get wrong and I make sure you make informed decisions, have peace of mind, control, power, and influence. I also talk to doctors and nurses directly if you want me to and 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.

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 that crucial 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.

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

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

Now, if you want your email to be read out and answered quickly, leave a small donation in the super chat button and I will get to your email very quickly. You can also leave a small donation if you like the work that we are doing, the more families we can help all around the world in intensive care by giving them as much information as possible.

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.