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Quick Tip for Families in Intensive Care: My Grandma Had a Stroke, Went to Long term Acute Care (LTAC) on Ventilator & Tracheostomy, She Went Downhill Fast in LTAC!

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

So, today’s tip is an email that I have from Dawn who says:

“Hi Patrik,

My mom actually sent me a video of you, and I ended up googling more info about patients’ rights and more videos from you came up.

My grandmother is 80 years old and had a stroke on September 22, 2023. When the stroke was happening, she was conscious awake and even helped herself on the stretcher when the ambulance came. We live less than 5 minutes from the hospital. They could probably see our house. 

When she went in for a CT scan the night of the stroke, the nurse said she was talking, and then she stopped responding all of a sudden. They intubated her. It took her three days, but she opened her eyes. Eventually, she responded by pressing her hands down for yes. It was slow but she could hear and understand. Some days her arms could move and other days they couldn’t. It took a week to consistently keep her eyes open and open them on command. By Week 2, the doctor wanted the tracheostomy and PEG (Percutaneous Endoscopic Gastrostomy) tube. We knew several nurses and my family is religious. So, we prayed and explained to my grandmother and asked if she wanted to go through with the surgery. She agreed. We were told by the doctors that being fully intubated on a ventilator past 14 days could damage her throat.

She had the surgery, and the very next day she went on a breathing trial off the ventilator and was on oxygen and no ventilator for 6 hours. We were told by the RTs (respiratory therapists) that she would have good and bad days but ultimately, the goal was to give her a speaking valve and plug up the tracheostomy. Mind you, we were told from the moment she had the stroke she wasn’t going to make it; she was going to be a vegetable, she may have opened her eyes but she’s not there. Everything they said she would be, she did not be, she did more but her healing was slow.

After surgery, the hospital social worker gave us a list of hospitals we could choose to help continue her care. We didn’t think anything because we were so devastated about the stroke and cheering on any progress she was making. They wanted to send her to a new facility. We thought, it was very strange. About 15 years ago, she had her first stroke. She was getting a procedure to remove plaque from her arteries and a piece broke off and caused her to have a big stroke. It took her a long time to wake up but while she was sleeping, the physical therapy team worked on her body. She learned to do everything all over again, but she had a life and even lived on her own afterwards.

Fast forward to September 2023, we signed off for her to go to an LTAC — Cornerstone Specialty Hospital. I’ve never heard of facilities like this before. Again, her previous stroke, everything was done in that hospital. So, she gets to Cornerstone and immediately, we notice that they seem short staffed. They put her back on full ventilator settings, even though she left on spontaneous breathing from the other hospital. Other things didn’t look okay, but the facility was between two major hospitals — Baylor Scott & White and Seton. 

About a week goes by and she’s fully off the ventilator but she’s coughing and spewing up a lot of mucus. We were told she looked to have the beginning stages of pneumonia. She’s never had pneumonia in her life, and we made sure she didn’t get COVID, so this was new territory for us. Another week goes by, and she is moved upstairs to a medical surgical floor. The day she is moved, we were told she has a UTI (Urinary Tract Infection), and her urine has bacteria in it. She’s in medical surgery for two weeks and then we hear something is going on with her kidneys and they give her albumin. They also started giving her blood thinner like Eliquis. She’s never had that before, and it has never been given to her before the stroke. Her hemoglobin is dropping and then when suctioned, she is bringing up blood. By the second week off the ventilator, she has pneumonia, a UTI, and she is bleeding and they have transfused her. The event that sent her back downstairs to the “ICU” at the LTAC was an RT suctioned her too hard and the blood started pooling and she started struggling to breathe. The nurse didn’t seem to know the “protocol” and the RT had to bag her and take her back to ICU. 

By this time, her pneumonia had gotten worse to where she is struggling to breathe on the ventilator. Then we found out that not did she have pneumonia and a UTI, she also contracted VRE (Vancomycin Resistant Enterococci). She is highly antibiotic resistant. By this time, I am in contact with her family doctor and begging her to give advice, visit her, and do something. Nothing was making sense. The family doctor said, due to what we were telling her, she needed an Infectious Disease doctor and hematologist. The physician on staff said they couldn’t get Infectious Disease doctor, so they were willing to let her transfer out. “Great!” We thought. The same doctor came back and found out they had access to telemetry health. So, they stopped the transfer. Nurses get upset with us, RTs halfway doing work. Basically, every time she’s improving, something happens, and they make it worse. The pneumonia is never taken care of because they give her a different antibiotic that was suggested by the Infectious Disease doctor.

Her breathing improves and we start the weaning process over and over again. Then we get news from the kidney specialist that nothing is wrong with her kidney but something else is causing the bleeding and disruptions in the kidney. They ran labs twice. We are getting no news if the antibiotic is working on the pneumonia, but they said her white blood cells 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 mess. 

She had a week and 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 making urine, and by the next week everything slows down. 

She’s still opening her bowels, but her urine output is less. Then she starts swelling all over her body and she weighs way more than I have felt her weigh. One day, she’s looking sweaty. I tell the nurses and they don’t touch her, and they say, “She doesn’t look sweaty to me.”

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

Finally, the admissions and discharge nurse come and speaks 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? She’s not. We begged them to put her on the BIPAP (bilevel positive airway pressure), at least. She just looks 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 the physical therapist says she needs to have a baseline so I’m doing her PT. 

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

She has to be put on dialysis and she has permcath in for dialysis. While at the LTAC, more than few times she starts to breathe more rapidly. It’s random times but we notice it only happens with something physical. 

At the regular hospital, the breathing is often, and she sweats, and turns colors. On Christmas morning, her heart rate and blood pressure drop and she codes. They perform CPR and she gets a pulse after the second time. She goes back to the same ICU of where she admitted for a stroke in the first place, not even a day after coding. Here comes the doctors and say, “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 denies 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 for us anyway and we will never leave her alone.

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

I hope you can help us.

Thanks for your time.

From, Dawn.”

Well, thank you so much, Dawn for giving such a detailed overview of your grandmother’s situation. I’m very sorry to hear that.

Once again, I have made countless videos over the years where clients literally beg us to either help them to get their loved ones out of LTAC which we’ve done successfully, or where they beg us to not let their loved ones go to LTAC in the first place. Again, we’ve done that successfully many, many times.

It’s another sign that going to LTAC is an absolute disaster. We’ve had nurses right in here at Intensive Care Hotline saying to us, “Well, I used to work at LTAC, now I work in ICU. LTAC is just dangerous. It’s not equipped to look after ventilated patients.” Here in Dawn’s email, that’s confirming that again, she’s saying something along the lines of, they would be weaning her off the ventilator without a humidifier. Well, that was done in the 1970s and 1980s. Now, you have patients on humidifiers with a ventilator. It’s absolutely critical for patient comfort, but it’s also critical that the lungs get enough humidification and that you can wean off a ventilator.

There are so many other examples in there why Dawn’s grandma should have never gone to LTAC in the first place. LTACs do not have the skills to wean someone off a ventilator, if anything, they made a mess. But here’s the bottom line, it sounds to me like Dawn’s grandma was in a good position when she first left ICU. So obviously, the ICU where she was at to begin with did a lot of things right.

So, here’s my take on that. If something’s working, you got to do more of that, not less. Well, if you’re sending a patient to LTAC, we will definitely be doing less of that because patients go from ICU on a ventilator with a tracheostomy are critically ill. They have 1:1 nurse to patient with ICU nurses, ICU doctors, RTs, that’s in the US. In other countries, there’s no RTs, but doesn’t matter.

So, obviously she’s right on track to recover and then they’re sending her to LTAC, and everything goes downhill from there. In LTAC, they have a nurse-to-patient ratio of 1:4, 1:5, sometimes 1:10, and they’re not ICU nurses, they’re not even ventilator trained. That is madness, which is pure and absolute madness and its negligence. The number of emails and calls we’re getting a week from families having loved ones in LTAC and explained to us similar devastating scenarios is through the roof. So, do whatever it takes to keep your loved one out of LTAC so you’re not in a situation like Dawn is here with her grandma. There are so many red flags.

Here is another thing that I’ve been saying for many years, if you let your loved one go to LTAC, they bounce back to ICU often within no time and then they’re often bouncing back to another ICU because the ICU where they’ve been discharged from no longer has a bed or might be a location issue, whatever the case may be. But picture this: Your loved one goes from ICU is extremely vulnerable, is critically ill, goes to LTAC, bounces back into ICU because LTACs cannot look after them, and then bounces back to another ICU, and then your loved one would be in three different locations within no time in a stage where they’re critically ill. That is pure and utter madness and its negligence to the extent that I can’t even describe it.

When patients are critically ill, they need stability, they need a team that rallies around them and helps them to go from A to B. That is what they need, not to be moved from place to place because it’s convenient for finances, for bed management, for staffing issues, whatever the case may be, anyone that’s worked in a hospital.

Well, I’ve worked in 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 all around the world since 2013 here at intensivecarehotline.com. I can confidently say we saved many lives with our consulting and advocacy.

You can look that up at intensivecarehotline.com on our testimonial section or you can look it up on our podcast where we’ve done client interviews.

So, do not let your loved one go to LTAC. If you have them in LTAC and you can see what’s happening that it’s not even substandard care, then they start talking about sending them to a Skilled Nursing Facility, it will get even worse. Reach out to us and we can help you get your loved one back to ICU with our advocacy.

So, because we get so many questions from families in intensive care, for example, this question from Dawn came in January this year and we’re now at the end of April by the time of me recording this, we can barely keep up. I’m making so many videos, just reading out emails and client questions, and in the meantime, we’re serving our paying clients of course.

That’s why we created a membership for families of critically ill patients in intensive care so that we can help more families and you can become a member if you go to intensivecarehotline.com if you click on the membership link or if you go to intensivecaresupport.org directly. In the membership, you have access to me and my team, 24 hours a day, in a membership area and via email, and we answer all questions intensive care related.

In the membership, you also have exclusive access to 21 eBooks and 21 videos that I’ve written myself with all my experience in intensive care and decades of experience having looked after thousands of critically ill patients in intensive care and also having looked after, consulted hundreds of families in intensive care here at intensivecarehotline.com. With the books and videos, I’ll help you to make informed decisions, get peace of mind, control, power, and influence, so that your loved one gets best care and treatment so that you can steer this difficult territory that is intensive care.

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. I also talk to doctors and nurses directly, of course. Once I start talking to doctors and nurses directly, and I asked all the questions that you haven’t even considered asking but must be asked, you will make informed decisions, have peace of mind, control, power, and influence once again, making sure your loved one gets basic care and treatment.

I also represent you in family meetings with intensive care teams.

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 suspecting medical negligence.

Now, and all of that you get at intensivecarehotline.com. Call us on one of the numbers on the top of our website or send an email to support@intensivecarehotline.com.

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 you want to see next, what questions and insights you have from this video.

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Thanks for watching.

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

Take care for now.