Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse
in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another question from our readers and the question was
The ICU Team Says that if My Dad Stays Longer in ICU, He Can Get Worse! Help!
You can check out last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer questions from one of my clients Erwan, as part of my 1:1 consulting and advocacy service! Erwan’s mother-in-law is with a
tracheostomy and on a ventilator and Erwan asks how they can transfer his mother-in-law back to ICU from LTAC.
We Are Not Satisfied with the LTAC Services. How Can We Safely Transfer My Mom-in-Law Out of LTAC back to ICU?
Patrik: Hello Erwan. How are you?
Erwan: I’m good. Yes. Thank you so much.
Patrik: It’s a pleasure. I believe for you, it’s like 4:00 AM.
Erwan: Yes, it is. It is. When I realized that you had an early appointment, I said, you know what? I will stay up and then I can get some sleep versus waiting till later in the afternoon, because time is of the essence. Where are you located right now?
Patrik: I am in Melbourne, Australia. For me, it’s like 9:00 PM. I’m talking to people from different parts of the world everyday so I’m well aware of time zones and I’m well aware of the ICU system from different locations.
Erwan: Okay. Very good. Well-
Patrik: Tell me, I got your email. Tell me a little bit more.
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Erwan: So my mother-in-law, she had a cardiac arrest end of last year, when she was hunting with her best friend, everything seemed fine. I mean, she had some other issues, which I’ll talk about before that, but nothing that seems like, oh my gosh, she’s going to die.
Erwan: So, the emergency team arrived on the scene. It was after they were actually skinning the deer in the parking lot and they revived her. So then she was intubated in the ambulance. And then when she got to the ICU unit, they put her on a mechanical ventilator.
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Erwan: It was a bit confusing at first because they said she was COVID free. And then a day later, they’re like, “Well, she has to do a COVID test.” And we said, “Well, we thought you already determined she didn’t have COVID?” They cleared it and my
father-in-law was able to see her daily for four weeks.
Erwan: So during those four weeks, she was in the ICU. She wasn’t improving very much, but she wasn’t declining as well, but there was no answers about, well, what does she have? Because one, they said she had pneumonia. Then another day she had another kind of infection. And then there
was maybe a UTI, MRSA, but we’re like, “Well, what condition does she have? Why is she in here? She doesn’t have COVID, what are you doing?” And then they were saying, well, her lungs had fluid so they had to drain fluid out of her lungs. And they had to use the paddles on her heart at least once at that ICU, because her heart had stopped. So we’re here before end of last year, and we’re like, “We want to transfer. We want to go to a different hospital.”
Erwan: So then there was some pushback on that. Well, “Okay. We’ll support it.” So then I had looked into a hospital in a couple of other places. Then they’re like, “Well, we need to do a tracheostomy because if you’re so many days on the mechanical ventilator, you can start developing scar
tissue in your esophagus and your voice box,” something like that. And it was really concerning to my wife and my father-in-law.
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Erwan: So then they started talking about this LTAC, L-T-A-C. I had looked into it and I actually came across your website before she had the tracheostomy and I
talked to an aunt of mine, and she was like, Why don’t you get her transferred in at the new facility if they think she needs a tracheostomy, as long as she’s… First she had to be stable to be transferred if she was going to get transferred to another ICU not the LTAC.
Erwan: And then, she was like, “Don’t have this hospital, do the tracheostomy, have her transfer on the mechanical vent, you have the right, and they can do the tracheostomy there.”
Erwan: So, I wrote a letter on behalf of my father-in-law and then we got a call from the pulmonologist and cardiologist, and then the hospital doctor at that ICU.
And they’re like, “Well, why do you want to transfer? We’ve already cleared that there’s nothing else that can be done. It’s not going to help them to go to the heart hospital. It’s not going to help her.” We have already confirmed available beds in some other hospitals. But, they talked my father-in-law out of it and then they just said, well, let’s do the tracheostomy here and then we can transfer her to an LTAC.
Erwan: I didn’t come across one of your articles until recent that I wish I would have come across earlier. And then I could have brought it up to them. But I was like, why do we want her in at LTAC? Because, she was starting to improve on the mechanical vent so well that they could do the tracheostomy. And I’m like, maybe she could just get weaned off the mechanical vent without getting the tracheostomy. So then she got to the LTAC and they
declined on my father-in-law, and I was on the phone with the doctor listening when she was saying, “Well, there’s nothing else, why do you want to go to another hospital when she needs to be in an LTAC? You have that, the type of care that the LTAC provides?”
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Erwan: Since she’s been there, it’s been four weeks or more. She’s just declined.
Yesterday, the person, the supervisor, or one of the people that switched out the tubes and the ventilator, because now she has a trache or whatever you call it tube, tracheal tube, they didn’t put her settings back to where she was on oxygen.
And my wife got to the hospital because they did open visitation this last week at this hospital, and she’s on 50. And then the respiratory therapist who was down the hall said, “Oh my gosh, that’s wrong.” When they changed out the tubes, they didn’t put it back on the setting that she needed and she could tell her mom was in distress.
Erwan: So now this is where we’re at. I’ve spoken with my father-in-law. He is wanting to do whatever it takes just to know that we’ve done…She’s still cognitive.
When we see her, she will blink her eyes, wave her hand a little bit and she’s still there. She can hear us, we understand her kidneys are good, her liver’s good, but her lungs aren’t healing… And then I don’t know, it could have been pulmonary edema.
Erwan: She had a surgery of where they put dye in your veins to see if you have a blood clot. And then the doctor who was actually the cardiologist at the first ICU said, “We shouldn’t have done that procedure because you didn’t have a heart attack.” She had
an episode where she just got faint of breath. And then one doctor said she had a heart attack another said she didn’t, so then they put dye in her veins and then they didn’t find any blood clots. And they’re like, “Oh, we shouldn’t have done that.”
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Erwan: But then, she didn’t follow up on it up until she was admitted this time, “What happened? Why did I feel like I was having a heart attack?” So anyway, that’s where we’re at. She’s 72 years old and… Yeah.
Patrik: Okay. And your father-in-law is the medical power of attorney. He’s the proxy?
Erwan: Yes, he is.
Patrik: Okay. And what would you like as the next steps? What would be your ideal scenario with all the information that you’ve got? What are you hoping for?
Erwan: We want to have her be checked by a specialist for lungs and heart. So there was the pulmonologist and the cardiologist at the other ICU that is also the same cardiologist and pulmonologist that goes to this LTAC. But we want to know what rights do we have to get an independent opinion or do we have to stick with the ones that are assigned to this hospital or do we have to really go through the process? When I found out how you get
someone out of LTAC, you have to call an ambulance and get them transferred. And I just can’t imagine how traumatizing that will be for my mother-in-law if she doesn’t know what’s going on.
Patrik: Do you know if your mother-in-law has health insurance?
Erwan: She has health insurances.
Patrik: That’s okay. That’s okay. I just needed to rule that out. That’s fine. As far as you know, what stops her from getting off the ventilator? I hear that the lungs are damaged, but, have they tried a weaning regime?
Erwan: We don’t believe so. I called an hour ago or just about two hours ago and she was at 100. Because she had gone down to 60 before she left the other hospital. And that’s why they… Because she had to get down to 50 or 60 to do the tracheostomy. I remember that.
Patrik: Yeah. Absolutely. That would have been a requirement for sure. That would have been a requirement. You see what doesn’t happen in LTAC, if you look at the LTAC websites and all of that, they’re claiming that they’re specialists in weaning.
They’re anything but.
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Erwan: Right. And that’s what sold my father-in-law, because he was like, “No, but they’ll help her.” Because I already had reservations. I just think this seems fishy.
Patrik: The LTAC is a better version of a nursing home. And I argue that if she now is on a hundred percent of oxygen, I argue she needs to be back in ICU. Without knowing anything else, I would argue, she needs to be back in ICU.
Erwan: Right, because she’s at a 100%.
Patrik: Absolutely. Because the risk for something else to go wrong if she’s on a 100% of oxygen, it’s just there. So, how do you get updates? Who’s updating you and your family about your mother-in-law’s condition?
Erwan: Just this last week they did open visits, 2:00 in the afternoon to 6:00. I went last weekend and then my wife and my father-in-law had been going alternate days. So that’s how we’ve been getting the best updates and then calling in the morning. And then, there’s a case advocate. There’s two people assigned to the case, at this hospital and the nurses seem to be prodding my father-in-law and my wife that they really like my
mother-in-law, which they’ve been giving them some information just to ask, outside the care.
Patrik: Okay. And have there been any meetings with the doctors, whether in-person or over the phone?
Erwan: There’s been no meetings in person, but, I know when the episode just happened, it was two days ago about the tube or when the tube had been changed and it was on 50 instead of it probably needed to be 90 to a 100, the doctor did called my father-in-law and apologized and acknowledged his concern. But he had lodged a complaint and then she was calling her back the doctor from that hospital.
Patrik: Right.
Erwan: And then..
Patrik: Have they given you any reason why she went back to 100%?
Erwan: I don’t know that exactly. I could have them ask, but I think it’s gone around, well, she had pneumonia. Did I tell you the other thing about the COVID?
That all over her charts at this hospital, they say, well, she’s a COVID patient. And we’re like, no, she isn’t because she was able to visit her at the other ICU so she was never tested positive for COVID so why are you guys keep saying that she had COVID, when at the other hospitals he was able to see her every day, pretty much. But for the first two days they just made sure she didn’t have COVID so then he was there.
Erwan: And none of us had it, because we were all around her, but at this hospital and then that’s what got the nurses talking to my wife and father-in-law. They’re like, “Well, that is really weird.” Why does it say on all of here and my wife looked at it and it kept on just saying COVID symptoms, COVID symptoms, COVID symptoms.
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Patrik: Well, look, my suggestion is that you and your family will get on the call with the doctors and find out what’s exactly happening and ask them, what are the steps to improve the situation? That would be my sort of recommendation as a next step, unless you had something completely different in mind?
Erwan: Not at the moment. You did bring up a point that I didn’t think of it, being at 100 still. If there was an emergency and she didn’t have ICU care as accessible. I mean, it’s close to a big hospital but she’d still have to get moved to ER, surgery room if she had to, if something major happened. But I mean, still, we don’t have a true diagnosis, was it pneumonia, pulmonary edema can happen, just an array of things that was not COVID.
And did they-
Patrik: Have you asked for access to the medical records?
Erwan: We just did and it’s going to take according to them 30 days.
Patrik: Okay. So that means they don’t have electronic records.
Erwan: I guess so. We don’t have 30 days to wait to see what they say.
Patrik: Many hospitals now are electronic. Many of our clients have access just to a website and we can look it up and that’s really helpful. But there are many old fashioned hospitals out there, but just maybe some closing thoughts because I do need to move on maybe some closing thoughts. If someone is on 100% of oxygen, the risk of things going wrong is there. In LTAC, it would have one nurse for four or five patients, and, in ICU she
would have one nurse for one patient or one nurse for two patients.
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Patrik: I’m almost bound to say it’s almost criminal having one nurse looking after four or five patients and one of those patients is on a 100% percent of oxygen.
That’s almost unheard of. I would argue it needs to go back to ICU rather soon, or, they need to show to you that she is safe and I don’t think they could show that to you.
Erwan: Okay. And then I saw you have different I guess ranges of agreement. And I was thinking of the two week one, just to help us get through this time or have someone… Well, they’re saying this to us, what’s our response or what can we-
Patrik: Absolutely.
Erwan: And then is that until… Is it basically advice like this, phone consult, phone advice, or is there any drafting of, I guess if there’s a document demand or anything like that, or…?
Patrik: Or email, even text messages, whatever… Phone, email, Zoom, text messages, whichever works best. Also, if you wanted me to get on a call with the doctors, with you or your father-in-law or whoever, or with your wife, we can set up a conference call or set up a zoom call, whatever works. But, I do believe a call with the doctors would be beneficial or even with the nurse in charge or the nurse that knows your father-in-law.
The 1:1 consulting session will continue in next week’s episode.
Kind regards,
Patrik
