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 “PODCAST“ and in the last Podcast I interviewed Adam who was able to have her Dad in ICU instead of LTAC and the last episode was
The Doctors Asked Us To Stop Treatment, But I Gave My Father In ICU A Chance Instead!
You can check out the last PODCAST by clicking on the link here.
In this week’s episode of our “PODCAST“, I interviewed another one of my clients Manuela whose 20 year old daughter was transferred to the ICU and was intubated due to grand mal seizures.
ICU wants to do a tracheostomy for my 20 year old
daughter against my wishes! Now they want to remove my guardianship! Help!
Today’s podcast serves as a great case study how our professional consulting and advocacy service can help with appropriate care and treatment for Patients in ICU.
Manuela found her 20 year old daughter intubated in ICU where the ICU was trying to remove Manuela’s legal guardianship and then perform a tracheostomy on her daughter against her wishes, that would have sent her off to a nursing home or to a long-term acute care facility (LTAC)!
After Manuela contacted us and we started working with her, we advised her on how to
safe her parental guardianship, but also how to get her daughter to another ICU where she had the breathing tube removed within less than a week and is now at home recovering, instead of in a nursing home or LTAC!
You can listen to the Podcast here or read the transcript below.
Manuela: Hello?
Patrik: Hello, and
welcome to the IntensiveCareHotline.com Podcast. IntensiveCareHotline.com helps families of critically ill patients in Intensive Care to instantly improve their lives so that they can make informed decisions, have peace of mind, more control, more power, and more influence so that families can stay in control of their, in their
critically ill loved one’s destiny. I’m your host, Patrik, founder and editor of IntensiveCareHotline.com. As part of our interview and podcast series, I have a very special guest with me tonight. I’ve got here with me Manuela from New York. Manuela, how are you?
Manuela: Good, thanks Patrik. How are you?
Patrik: Very good, thank you. Manuela, I really want
to thank you first of all to come on to this interview. You’ve contacted us last month with a situation, with a very difficult situation, where you had your daughter in the Intensive Care Unit. She was on a ventilator and she was intubated, and when you first contacted us, you encountered a really difficult situation. Can you share more about the situation that you found yourself and your daughter in last month?
Manuela: Yes, I can. My daughter first went to
one hospital, where she had a UTI and pneumonia. It was treated with antibiotics, which was fine. She was released after nine days. But, two days later, she had a 106 rectal fever. I took her to a different hospital, where I went through ER, I called EMS and I
went to the ER. I was immediately asked, uncomfortably so, about whether I had guardianship over my daughter.
Patrik: Right.
Manuela: Which was not a problem for me to give, but I had never been asked before. You know, a copy of my guardianship papers and to … Anyway, they took an x-ray in ER. They told me her lungs were clear. They took a nose swab for the
flu and that tested positive, so they said, and they put her in a, not in the ICU, in the step-down unit, and weirdly enough, they put her on antibiotics for the flu.
After all these hours overnight, 15, 16 hours there I told my husband to watch for my daughter. I went home briefly, and I got a phone call from home no sooner than I left, and a doctor tells me that he had intubated my daughter and she was on life support. I was completely shocked. Shocked!! I went to the hospital. And now she was in the ICU, intubated and she was on 50 megs of, units of Propofol, and she was put in an induced coma.
I talked to a neurologist who wanted to upper one of her medications, and I told him that I wanted to ask our own doctor before I even agreed to it because I said to him, an epileptic drug would not really make a difference in treating the
flu.
Find more information about induced coma:
Patrik: Why-
Manuela: Because it’s an epileptic drug.
Patrik: Right. Do you know why, why did they intubate your daughter at the time? What was the reason they were giving you?
Manuela: The reason was said on the phone by this doctor, “You’ve got a young lady here who is not responsive, and I intubated her.” But my daughter at this point in time cannot speak.
Patrik: Yeah.
Right.
Manuela: Now does that mean to him nonresponsive? I mean that’s the only reason he gave me.
Patrik: Yeah. Yeah. And your daughter at that stage was nonverbal anyway.
Manuela: She was nonverbal yeah. She was nonverbal.
Patrik: Yeah. Yeah.
Manuela: And she had the flu, and she was sleeping just like I left her sleeping, I mean you have the flu that’s all you really want to do, is sleep.
Patrik: Absolutely. And you know there must be more significant, there must be genuine clinical reasons before you intubate someone. And it sounds to
me like you haven’t been given those reasons.
Manuela: That’s correct. I have not been given those reasons.
Patrik: Yeah. Yeah. And how did that make you feel when you say at that, you know when you first went to ER that they were asking you for guardianship papers? I mean, how did that make you feel at the time?
Manuela: It raised a red flag. It absolutely raised a red flag. I mean, that night I went to the ER but the next day I called the patient advocate. She said it raised a red flag for her. I called my lawyer, she said it raised a red flag for her. It was uncomfortable.
Find more information about patient’s advocacy:
Patrik: Yeah. And I guess as your journey went on and those red flags were sort of confirmed, but I’m sure you can share that, what happened from this point forward, after they intubated your daughter. What happened from there?
Manuela: Well, I talked to neurology. He wanted to raise one of her medications. And I said to them, “No. I’m going to talk to my own neurologist to see.” And he said to do it, to raise it minimally, not too much. And I said okay.
I went back the next day, and that hospital
told me verbatim, “Today is another day. We will raise it more than twice (this medication) and give her a booster”.
Patrik: Right.
Manuela: And I told them, “No. Absolutely not”.
Patrik: Right. And what was their response to that?
Manuela: Well, their response to that was, “Let’s call neurology. You need to talk to the neurologist”, who never called back, I guess. Never called back the hospital to talk to me. The problem with that hospital was that my husband slept there, to watch over my daughter. Between 7:00 am and 11:00 am, he had to leave when the hospital did the rounds. That is the weirdest thing I’ve ever heard, because doctors usually want to talk to the family when they do
rounds.
Patrik: Well, yes, you’d hope so.
Manuela: And he said every time I … Yeah, go ahead.
Patrik: You hope that the hospital would want to talk to a family during the ward rounds. But was that what really happened in your situation?
Manuela: Yes, it really happened.
Patrik: Right, right.
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Manuela: He had to leave. He had to leave, and each time he left, I was informed that they allegedly did a test. They allegedly did an EEG (Electroencephalograph). Not possible. Her hair was not full of glue. Her hair was freshly washed. I had washed it a couple of days before.
They did a midline. They did apparently a lot of x-rays, which I’ve come to
find out now. They did an MRI on her. They did an ultrasound on her. They did the cat scan. That’s a lot of radiation. And we were only at that hospital a few days.
Patrik: Right, right. And what was your concern with increasing the anti-epileptic drugs? We probably should share with our listeners that your daughter has a history of regular seizures. But what was your concern with your daughter being on a ventilator, and then getting more anti-seizure drugs while she was already on Propofol and probably some Fentanyl? What was your concern there?
Manuela: My concern was that, in my opinion, she had the flu. Why they intubated her is beyond me. And for the flu, you don’t need to raise the anti-epileptic drugs. In my opinion.
Patrik: Did she have-
Manuela: She didn’t have any seizures.
Patrik: Right, right. Yeah. And as most people would know, if you are in an induced coma, it’s difficult enough to get out of an induced coma. And if you have more sedating anti-seizure drugs, it’s even more difficult to come out of an induced coma. Which was a concern you identified early on, or throughout this
journey.
What did you do next?
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Manuela: Well, since I refused, the hospital said, “You need to change hospitals”. And I told them the hospital of my choice. And they told me that I had to find an accepting doctor, which was unheard of. They should find an accepting doctor in the hospital of my choice. They were not willing to do that.
And I went to the hospital of my choice,
and it was not possible for me to find an accepting doctor. So then, this hospital said, “Go to another hospital”. Which also, I have to say, I’m going to say it, Catholic Health Systems, right? I’m going to have to say this.
Patrik: Right.
Manuela: The same company, so to speak. And they said to go to the other hospital for a few days, to do an EEG, and come back to them. And I suggested the hospital of my choice, and Critical Care Management told me that would be too risky to take her and actually drive to the hospital of my choice. And I countered that by saying, “You’re going to do two trips. One to one
hospital, and back to you? If one trip is risky, then two trips are double risky.” And they disagreed, naturally.
Patrik: Right.
Manuela: Then, we transferred out to the other hospital and have her treated.
Patrik: To the hospital of your choice.
Manuela: No, of their choice.
Patrik: Of their choice, okay. Okay.
Manuela: It was the hospital of their choice. Not my choice.
Patrik: Right. Okay, and what happened from there?
Manuela: They promised me that the tube, that she would be extubated. And they gave me one reason after another, they were very nasty. They talked down to me, the PA’s. Told me I knew nothing. They gave her more medication, which I was against. And they didn’t extubate her. And the problem is that time was running out. More than 14 days to my understanding, you will get a cut in your throat.
Related information about ventilation, breathing tube and tracheostomy:
Patrik: That’s right. You will often get a tracheostomy. And by that stage, you had already contacted me. And I’ve given you enough insight, in terms of why we needed to avoid the tracheostomy, and why we needed to get her extubated as quickly as possible.
But then, from what I remember, there was another big red flag showing up from your end, that if your daughter was to end up with a tracheostomy, they had the next steps lined up already, which would
be…
Manuela: They had the next steps lined up. The first hospital had an old age home, my daughter’s only 20, to put her in. And the second hospital of their choice had a home for children, I think some adults as well, that they wanted to put her in. And that was not going to be a choice, that’s no choice. It is to keep her home, safe.
Patrik: What a
nightmare situation. I still get goosebumps just thinking about it. What a nightmare situation, to have that outlook to potentially have your daughter ending up in a nursing home, in an old age nursing home. Or even with young people. What a nightmare situation.
Manuela: That’s correct. That’s correct. And then I contacted you. I was lucky to get a hold of you. We talked. You gave me a lot of insight. And funny, the night
before I contacted you, the very next day, I go to that second hospital, and I meet a new neurologist. It’s the next week, staff changes, so we’ve got a new crew.
And he not only gave my daughter a paralytic, which paralyses you, to see whether she had seizures on the EEG (Electroencephalograph), when his colleague said she had no seizures. He then wanted to give her, without telling me, intravenous meds, which are generic anti-epileptic drugs, which my daughter gets seizures from. She takes only brand name drugs. And I bring my brand name drugs to the hospital for them to use it.
And when I refused the generic drugs, that hospital told me they
will that same night take away my guardianship. And I called you, Patrik.
Patrik: Yeah. Yeah.
Manuela: You told me what to do.
Patrik: What a nightmare situation. And your red flags were initially confirmed there, when they first asked you about the guardianship, and then to bring up the
guardianship issue again. I mean, were I in that situation, or any parent, to even have to think about that they could potentially take the guardianship away for your daughter.
Manuela: That’s correct. That’s correct. And then they could go and do anything they want to her. And that’s my concern. They can do the tracheostomy, they can, I don’t know, operate another way. They can do anything, because they always said we need to
know where the seizures are coming from.
Well, you know what? Not so much, not with my daughter. It’s not going to happen.
Patrik: Yeah.
Manuela: That night, you told me what to do about this guardianship thing, and I went to the nurse manager. I told her, number one, I want to have some records, exactly
as you said. By the next day, at 10:00 am, I gave her a time exactly as you said. And I want the agenda. We were to talk to a meeting the next day, with this hospital. The second hospital. I want the whole thing.
And you said get the agenda in written form. And I told her that. And she said, “We don’t do it”. I said, “You’re going to do this for me, and that’s it. You’re going to do this, and you’re going to give me a copy.” And I said, “You
said you will be there”.
She said, “No, but our law team will be there”. Well, that’s all I needed to hear, because the truth is, she has to disclose to me, she has to. There’s no ifs and buts, she has to tell me that their law team is coming. I said, “You have to tell me, because this way, I can bring my lawyer. And tomorrow, the meeting is off”.
And that’s when they called the neurologist
that gave her the paralytic. He got on the phone, he gave me a long story, why generic drugs allegedly are the same as brand name. He called me uneducated, and that’s okay.
And then I repeated everything out loud, what he said. I said, “Let me repeat what I heard you say. Let me just repeat what I heard you say.” And he knew I called from the nurse’s front desk. He knew. He knew the whole ICU heard him. Everybody working there heard me, not
him, heard me say it, heard me repeat what he said. And then he finally said, “Which hospital do you want to go to? I will make arrangements.”
Patrik: Yep.
Manuela: I was ever so happy to hear that.
Patrik: Yes.
Manuela:
It took me … He made, within three minutes, he made touch with an accepting doctor, and we finally went to a hospital of my choice.
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Patrik: Yeah. By then, they knew that you wouldn’t take no for an answer. And by then, they knew you were asking all the right questions. But just for our listeners really, what’s important there to
know, your daughter was in an induced coma, which is challenging enough. And then they were giving her paralytic drugs, which delays people of coming out of the induced coma, and they usually need even more sedatives when they’re getting paralysed.
So, you could see the writing was on the wall. They were heading potentially towards a tracheostomy, and then potentially put your daughter into a nursing home, into a home. So, thankfully you recognized all of those red flags, and then you were
proactive.
And then another thing that worked in your favour, you took action. A lot of people that come to us, they’re too afraid to take action. They’re too intimidated by the doctors, by the nurses, by the system. And you can’t be intimidated, you’ve got to do what’s right for your family member. Which is what you’ve done.
Manuela: There is always something you feel. You
feel that it’s the right thing, and it’s the wrong thing. If you feel something is wrong, everybody has that feeling. It has to be you sitting in that hospital, and you say, “There’s something wrong, there’s something wrong.” Try to get out. And don’t ever be afraid. These doctors, they think are godlike. There is only one God, and it’s not them.
Trust me, it’s not the doctors, it’s not the nurses, it’s not the PAs. They like to talk down to
you. Come to them. They insult you, it’s okay and if they insult you, it’s okay. That’s not what’s important. The important thing is to get my child out of this evil hospital, and get her into a hospital of my choice.
Patrik: Yeah.
Manuela: And with your help, Patrik, we did that.
Patrik:
Yes. Yes. No, absolutely.
So what then happened in the other hospital? What happened from there?
Manuela: So, the hospital of my choice took Alexandra in, took my daughter in, and I met with a team. I met with a team for rounds. They rounded at 10:00 pm, which was fine for me, and they told me … They took a long time to get her ready for me to see her in ICU. She was still
intubated. And they told me that her heart had stood still for a few seconds. We had a cardiology on call. They had a sonogram of her heart. Cardiology said her heart is okay. The problem was that the drugs given at the other hospital made her heart stand still. They actually could have killed my daughter.
Patrik: Wow.
Manuela: That’s a problem for
me.
I’ve had a great team of doctors. They waited a few more days. That’s on their last day, because they changed doctors every week, like every hospital changes staff every week. They extubated her with no problem. She had a high heart rate, her heart rate went down from normal. Everybody was surprised. Everybody but me. Because she didn’t need to be intubated anyway. They did it for the money.
Patrik: What a terrible forward.
Manuela: Easy ten grand a day, intubation and ICU room you know… Easy $10,000. That’s a terrible thing to do a person.
Patrik: Absolutely. Absolutely. Not only terrible thing to do, I mean, the side effects are huge. It’s not only the side effects, it’s also, especially in your first
hospital, the long term outlook was basically your daughter ending up in a nursing home, with a trach. What a nightmare, and I should say, your 20-year-old daughter.
Manuela: 20 years old.
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Patrik: But what a nightmare.
So then, basically, rather than your daughter having a tracheostomy within … How many days did you say, again? Within four days, she then was extubated. Is that right? Four days?
Manuela: No, she was 12 days. Intubated for 12 days.
Patrik: 12 days. Yes, but how many more days, when she changed hospitals? As far as I remember would have been three or four days before she then got extubated.
Manuela: She changed … It would have been another week at this time. At this time. They kept her intubated, they told me they tried to extubate her, but there was swelling in the throat, so they needed to give steroids to get the
swelling in your throat down.
Patrik: Yes, yep.
Manuela: And they did that. Before you can extubate, with the swelling in the throat, that’s no good.
Patrik: No, no. It would have been too risky.
Manuela: You
know…
Patrik: It would have been too risky. It could have been detrimental to everything that was happening. So it could have made things worse.
So then, your daughter got extubated, got out of ICU, and now she’s back home?
Manuela: Well, we’re back home. We’re home for about a week and a half,
yes.
Patrik: That’s really good. That’s really good. And so far, your daughter is doing well?
Manuela: So far, she’s doing well.
Patrik: That’s great. What a change in situation that could have gone down a completely different path.
Manuela: This situation could have gone so wrong, so wrong.
Patrik: Yeah.
Manuela: And thank the Lord, it didn’t. With your help again, I could call…
I mean, nobody here in New York was able to help me. Not a lawyer. Nobody knew what to do. Nobody knows what to do.
Most people are afraid. Do not be afraid of these doctors and nurses. Just stand up. Once you stand up, they will back down, is my understanding.
Patrik: Yes. And also, I hate to say it, it’s easy enough to just threaten them and say, “Look, I want this, and I want that, and if I’m not getting this, I’ll bring in a lawyer”. That’s often enough to get them to change. The other thing that was important in this situation, from my
perspective, was you weren’t afraid to implement. I am sometimes dealing with clients who are afraid to implement.
You also realized in this situation, you’ve got almost nothing to lose. You could just see the outlook was just bleak.
Manuela: Definitely.
Patrik: The outlook was just so bleak, that you knew
you had to do something.
And what happens in 99 percent of the cases, is that the hospitals or the ICUs are asking for family meetings. And I say to my clients, “Don’t go. Get the agenda.” You have every right to be informed about what’s happening, and sometimes they’re too timid to just ask. It’s just asking a question. They can’t force you to come to a meeting. What’s the point?
Manuela: That they’re going to take my daughter away from me? This was an option.
Patrik: Exactly.
Manuela: Neither one is an option.
Patrik: Exactly.
So, you weren’t afraid to implement. But let
me ask you this, what do you think the difference was in hospitals? Do you think … Obviously we know there has been a huge difference in approaches. Did you sense any ulterior motives from the first hospital?
Manuela: No. It was a completely different ball game with this hospital. They talked to me normal, in a normal way. They said, “You’re her mother, you know how she is. Let us know how she is. Bring in her aid, alter this.
Do with her as you do at home. Feed her her foods, not that Jevity. I don’t know what you had over there in Australia, but we have something called Jevity here that the patient gets through the feeding tube.
Patrik: Yeah, very similar here, very similar.
Manuela: So, they worked with me at this hospital. And I had a set of doctors that were perfect human
beings.
Patrik: Right, right.
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Manuela: And they knew what was wrong. They knew what was wrong at the other hospitals. They were not saying it, but they knew what’s
wrong, because they extubated her.
Patrik: Yeah. But the other question that I had was the first hospital, where you were, I believe in the Catholic system. Did you sense any ulterior motives there? Did you feel like they had a different agenda from the start?
Manuela: They had an agenda from the start. They saw my daughter, they saw she couldn’t speak. I
feel they waited for me to leave. Because I said, “I have got insurance”. They waited for me to leave. No sooner I left, I get a … I mean, I was home a little bit, but I get a phone call. She’s intubated. How is that possible?
Patrik: Yeah.
Manuela: I talked to an ICU doctor with me there, and I said to her, “She cannot speak at this moment in time”. I
explained it to them. And then, a social worker from the first hospital had called me and said to me, “I can recommend a great nursing home for her.” This was weird. I have never been talked to like that in any of the other hospitals.
Patrik: Right. So, you could almost see, and I remember us talking about this at the time, you could almost see that they had a pathway lined up that would keep your daughter confined to
institutions.
Manuela: That’s correct. And not only that, intubation can actually give you pneumonia, which ended up the case.
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Patrik: Oh, yeah.
Manuela: It ended up that she had pneumonia, and now she was given more antibiotics for a different type, which brings down her seizure threshold. It’s a vicious cycle. It’s a problem.
Patrik: Yeah.
Manuela: They made her sicker than she needed to be, for the money. That’s really what it was.
Patrik: Right, right. And you could see that they almost had the pathway lined up for your daughter, to keep her, almost keep her hostage in hospital.
Manuela: Exactly.
Patrik: And then, going on potentially to a nursing home. So, your instincts were probably right from the start, that when they first asked you about evidence of guardianship, and then they wanted to take away guardianship, and at the same time, they were basically lining up the pathway for your daughter. I mean, your red flags, thankfully, went off, and we took a dif-
Manuela: They
would have destroyed my daughter. They would have destroyed her, they would have killed her, they would have collected a lot of money from the insurance. They would have collected, just a lot of money. It was all about money. That’s what it’s about.
Patrik: What a scary situation.
Manuela: It’s scary, it’s scary to get sick and be in the hands of people like
that.
Patrik: Yeah, yeah.
Well, it’s good to see that you were able to turn this situation around. People who are going into intensive care in any hospital, people can’t be vigilant enough. They really need to be able to read what’s happening. They need to be able to look ahead and see what’s the most likely outcome? Are they doing all the right things? Again, you were able
to read the play, if you will.
Manuela: Nowadays, somebody said something to me in the hospital, and it is so true. Somebody said to me, Nowadays … Back in the days when we didn’t have cell phones or anything, people looked at doctors like, really, they were gods, and they believed everything they said. Nowadays, we all have a cell phone. We can all Google if in doubt. Google, read. You do nothing, you sit in the hospital
anyway. Google and read, Google and read. Google the medications, Google the side effects, Google how medications work with each other. Google it. Then you’ve got something to talk about. You will find out a lot that you will not like.
Patrik: Yeah. Yeah.
Manuela: That’s what I do.
Patrik:
Yeah, absolutely.
Manuela: Don’t just say the medication is good, the doctor said so. No. The medication actually made her heart stop for a little bit.
Patrik: That is really scary stuff. But thankfully, within a couple of weeks, your daughter was back home again. And it sounds like she’s back to what she was like before. And hopefully, you can keep
em…
Manuela: And now we have to move forward to get her back to normal.
Patrik: So she’s not quite back to normal yet?
Manuela: Well, she’s not back to her former baseline. Let’s put it that way. But when I get her back to her former baseline, we’re always working her to get her back to
talking and walking like she was four years ago.
Patrik: Right. Right, right. And that would have been impossible if she had been stuck in a –
Manuela: It would have never happened.
Patrik: Would have never happened. Yeah. No.
Manuela, I
really appreciate you sharing your and your daughter’s story, because again, it shares a valuable lesson for our listeners, where they can learn from what to do if they feel like they’re cornered in a situation like that. And there is always hope, or there is always a way to change an unfortunate situation with taking the right steps, with getting informed. And also, with not taking no for an answer, because I know at the time when you first contacted me, I realized you’re very determined here.
And that’s often half of the battle. You know you wouldn’t have let done to you daughter anything that wasn’t in her best interest. And that’s often half of the battle, to really stand up to what you know is right.
Manuela: That’s correct. People tell you you don’t know anything, you’re not a doctor. I know not about her medications. Or medication that they give in the hospital, that it’s not okay what they
do.
Patrik: Yeah. Yeah, absolutely. Absolutely.
And you know, it’s also a sign if you do want to change hospitals, there is a way. Because again, we get a number of inquiries here, where people want to change hospitals, and they ask what should they do. Yes, there always needs to be an admitting doctor somewhere else, but it is definitely possible with making a couple of
phone calls, with talking to doctors, or talking to the hospitals. It is possible. So if you are finding yourself in a similar situation, don’t give up. Contact us, or talk to the doctors to begin with. Find a way, like you have, and the doors will open.
So again, Manuela, I really want to thank you for taking the time to come onto this call and share your story there. That will really help our listeners.
Manuela: My pleasure.
Patrik: So, go and have a look at our website, IntensiveCareHotline.com, where you’ll find a lot of free resources. If you have a loved one in intensive care, you can also get one-on-one consulting and
advocacy. We also have an online membership where you can join a like-minded community.
And thanks again, Manuela, for coming to this call. And I’ll talk to you soon.
Manuela: I’ll talk to you soon, Patrik. Thank you so much.
Patrik: Thank you. Bye-bye. Bye.
Manuela: Bye-bye.
Kind Regards
Patrik
