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
10 Questions to Ask if Your Loved One has a Traumatic Brain Injury in Intensive Care! Live Stream!
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 Romeo, as part of my 1:1 consulting and advocacy. Romeo’s daughter is with a breathing tube and on a ventilator in the ICU. Romeo is asking why the ICU doctors give a poor prognosis to his daughter without evidence.
My Daughter is in ICU on a Ventilator & the Doctors Give Her a Poor Prognosis Without Evidence! Help!
Patrik: Hi! How are you?
Tess: I’m good. Thank you.
Romeo: So, I will give
you a quick update as far as I can.
Patrik: Sorry. Sorry, you are..
Romeo: I’m Sara’s
dad.
Tess: Romeo.
Patrik: Okay.
Romeo: I’m Romeo. I’ve got military education. There, I helped a surgeon put drips in, people that had prescriptions, clean the babies, kept everything warm
beforehand. Took stitches out of caesareans, things like that and helped the surgeon.
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Romeo: My daughter,
Patrik, on the 20th of September… Well before that, a year and a half beforehand, I went to a clinic, I found out that she had a fungal issue. So when I went to the clinic, the clinic there said that she had a lot of sugars in her blood, a lot of ketones. This is the first day that the virus went into this hospital, supposedly the first person that was admitted. They called me into the thing, said, “You’re Sara’s dad, come in there, they want to admit her,” and things like that. She’s 23, so she
doesn’t want to go. They give her a fungal tablet, they get her some cream and another cream.
Romeo: She was in denial that she had a fungal issue and she didn’t use that, she just used this soap. So what she did, she changed her diet and she ate a lot of
fruit. She looked at this doctor, a vegan, and she took herbs and things to clean her bowels and things like that. But yeah, obviously she lost a lot of weight. She was still alive, she was adamant she didn’t want to go into hospital or anything like that and it came to… She was doing well but she was… Soda pops, cider and alcohol and sugar and things like that, which I couldn’t stop her.
Romeo: And then her feet started swelling, then she was having trouble breathing later on, the last three days, before the 20th of September and she didn’t want to go to hospital. And then she was having trouble breathing and she couldn’t get up to go to the toilet, I was going to carry her to the toilet, because she’s 5’6” she was a big lady. And she’s alive now, Patrik and so we helped her, with her bowel movements, things like that. And she
was waning, she wasn’t breathing properly. So, I went to the neighbor who has got a vehicle, and then she came and she helped her with CPR and things.
Romeo: The paramedics came, 5 came, and they defibrillated her. They come and told me that her heart’s not working. And then she’s come back. She’s come back. So, they
get her up from downstairs, Patrik, they get her from downstairs outside, they had to wait obviously. So, she went out with a heartbeat and assisted breathing but trying to breathe. So, she was in the hospital there, in intensive care, then she went to the sister hospital, and then now she’s back at critical care. Her body’s stable, her organs are working, they’re putting her in an MRI.
Romeo: Last night the doctor just phoned here quickly, didn’t really say nothing, I’ll pass you to my wife in a second, and they didn’t really say nothing. What they want to do at 4 o’clock today is have permission to wean her off and do the tracheostomy in her throat. She’s been there since the 20th, but I have seen that they haven’t given any paperwork, anything like that really, really, really. They said yesterday, the nurse with this doctor, what they want to do is… They won’t tell us anything more but the nurse
said… I mentioned that we would like to get an advocate so we can get a clear picture, the nurse then butted in, over spoke the doctor anyway and said, “We’re only going to speak to the mom and no one else.” So I would suggest that Tess give you written permission. I’ve got the phone number that they’re there now. Speak to Tess but I’m trying to save my daughter, I’m trying to save my her.
Patrik: Of course.
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Romeo: But the last thing
that I wanted to say was, before they put her in the MRI, I saw there was another doctor, I can’t tell you her name right now off the top of my head but they asked her questions. They asked her questions because people, they said in a vegetative state. They asked her questions, they said, “Imagine yourself playing tennis,” so they see the response in the brain. They said, “Imagine yourself walking around your rooms in the house,” they see a different response. So then when she’s in the MRI,
they’re asking her questions and she wasn’t able to respond, so I don’t know what’s going on. Patrik, there is ways and I’m grateful and glad that you’re there to be able to assist us. I’d like to say hello and I’ll pass you to my wife.
Patrik: Can I just ask a few
questions? I don’t know who can… Just for me to get the bigger picture. So, they moved her from whichever hospital she was first to another hospital and now she’s back in that hospital? Why is that?
Rey: Yes.
Tess: That’s right.
Hello, Patrik, my name’s Tess.
Patrik: Hi, Tess.
Tess: I’m Sarah’s mother, we
don’t have a very good pair of headphones to speak through at the moment, I hope you can hear me clearly.
Patrik: I can hear you loud and clearly, both of you. Can you hear me?
Tess: That’s brilliant. Okay, your question was… Yeah, why is she back? Well, they were going to hold her in the hospital on Wednesday.
Patrik: Right.
Tess: And that was the
last thing we were told by a nurse and the doctor who was overseeing her care at the time. And they said that, “We’re going to hold her in hospital,” but then they went ahead and unexpectedly, “There’s nothing more we can do.” And then unexpectedly, she got a bed in this other hospital but there was suggestion that they were waiting on a bed.
Patrik: Is that COVID related?
Tess: No, it’s not.
Patrik: Oh, okay.
Tess: Pneumonia apparently but they haven’t been able to supposedly identify the bacteria. And there’s been a lot of
sketchiness about that.
Patrik: Yeah. No what I’m asking, I’m not asking if your daughter has COVID, I’m sure you would have told me that, I am asking whether the move from one hospital to
another is COVID related because they’re full in one hospital with too many COVID cases, that’s what I’m wondering.
Tess: No, not at all. It seemed quite inactive actually where she was at the time.
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Patrik: Okay. Can I ask another question? And you might think this might be totally unrelated but has your daughter had the COVID vaccine recently?
Tess: No, she hasn’t and she didn’t wish to have it either.
Patrik: Okay.
Tess: And we’ve been emphatic, especially yesterday, that we don’t wish for her to have it, nor have we had it.
Patrik: Yeah, okay. No, that’s great, because I think it’s a valid question in this current environment. Okay, that’s great. Okay. What is your biggest challenge at the
moment?
Tess: Well, the fact that yesterday their prognosis was poor, that we are not seeing any medical records. Although it was mentioned to Dan 2 days prior to meeting the
consultant on weekends, the doctor overseeing Sara, whose name is Dan she took me to one side and said to me, “Do you want to know about her general wellbeing and how things are going?” And I said, “Of course I do,” and he basically was giving information or suggesting that they were viewing palliative care as the next course of action. And I said, “Well, I wish to actually see…” I said, “I wish for you to please speak to my husband and her boyfriend Rey, they’re literally down the corridor.” He
came and spoke to them and her prognosis was not good, he said that quite clearly, “In spite of that, we are…”
Patrik: And who is he?
Tess: Excuse
me?
Patrik: And who is he? The person you’re referring to.
Tess: He was the doctor at the time on weekend that had been looking after her for about 48 hours before supposedly this consultant… He said there was going to be loads of meetings, on that weekend he said that, “There’s going to be loads of meetings this coming week.”
Rey: “Difficult
situations.”
Tess: “Difficult situations and decisions to make,” and he was patient but at the same time, I got the distinct impression, especially when I asked him for proof of medical
records and also what had been compiled thus far and also scans, his eyes widened. And remember, we’ve got only masks on so I can’t necessarily read all of his expressions but I did the best that I could and I got the distinct impression… Especially given the consultant yesterday didn’t have any paperwork on her to show us and yet we were somewhat pounced on by the situation and it was unexpected. Although we know that you suggest that an agenda be sought, yes?
Patrik: Absolutely.
Tess: Prior to any
meeting.
Patrik: Absolutely, absolutely. Always get it in writing what they want to talk about.
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Tess: Procedure was being done. I was expecting to see her at 4 o’clock, they knew full well, the reception said, “Oh, haven’t you received a call from us?”
Rey: They hadn’t called either of us.
Tess: They hadn’t called
either of us, yes? And they were preventing me from seeing my daughter, apparently a procedure on that day for Sarah. And yeah, the Critical Care Unit, of which we had the number for contact and everything, and what was it? The reception basically… I felt it was somewhat a bit sketchy because we were contactable, we weren’t informed that we weren’t meant to come up there because of this procedure. And then I said, “Well, may I just have please an update?” And they’ve given her blood
transfusions, they’ve already given her 2 blood transfusions without consulting me or asking for permission. And they’ve also done ECG I believe without even consulting me about it, and they’re just basically giving a very poor prognosis without giving evidence and that is deeply concerning.
Rey:
Yeah.
Patrik: Absolutely, absolutely. Can I just ask, do you know why they..
Tess: And they know she’s highly intelligent as well because we speak very highly of our daughter Sarah and we know her to… She was 6th in the country in networking infrastructure, she’s an absolute almost genius. She’s only in her 20’s and she’s an absolute gracious and kind and compassionate individual and she’s given a tremendous amount to other people and we need her to be helped.
Patrik: Of course, of course. And age does not change what should and shouldn’t be done for people, whether it’s on the upper end or the lower end. Age should never be a
point of discussion, what we do for people.
Tess: Exactly.
Patrik: It should
never be a point of discussion. Do you know why they’ve given her blood transfusions?
Tess: I tried to ascertain from the nurses as much as I can, some of them are reluctant to say anything to me. Which in the past, over these past 15 days have wished to
actually refer me to doctors, of which sometimes I’ve not been able to speak to anybody, sometimes have been able to, to fight a blood… Excuse me, she’s had the lung infection, hasn’t she? Which they’ve been very shady about. Yeah, they said they took an analysis and they’ve got it cooking. So that was as of about 4 days ago, that was the information given by Dan. So, they said pneumonia but they haven’t strictly actually verified the bacteria.
Tess: As to your question about blood transfusions, red blood cell count low was the reason given to me by one of the nurses and I said, “Where is that generated from,
created, the bone marrow?” And she confirmed that being the case and I said, “I understand that it can take about 150 days for those active red blood cells to be in the system, fully operating, and if her diet was compromised 150 days ago, it may have had bearing on this process now.” I think that there is probably truth in that. She has been underweight, she is frail. She is stable, she was initially unstable upon turning when she was at the first hospital, which they were showing… Well, the
nurse at the time, was showing deep concern about. It made him feel quite scared and he admitted to me that. On one occasion I was actually present when they were turning her and they were having to do a resuscitative process to actually stabilize her. Currently she is stable as far as I’m aware. They have taken her off norepinephrine. She was on fentanyl.
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Rey: Propofol.
Tess: Propofol. There was no sign initially of all of these twitching until the process of weaning her off, which evidently, they’ve established that there’s no brain
seizures going on from the EEGs.
Tess: They tried to give her
midazolam in the weaning off process.
Rey: Currently, she’s only on paracetamol.
Tess: Currently
she’s only on paracetamol and she’s still got the breathing tube down her mouth.
Patrik: So all sedation is off? All sedation is off?
Rey: Apparently, yes.
Tess: Apparently, but we don’t know how she could actually tolerate the situation and not show supposedly any signs.
Patrik: No, she can. Let me just ask a few questions here.
Tess: Yes, of course.
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Patrik: In your
initial text that you sent on Skype earlier you talked about they want to do a tracheostomy, is that correct?
Tess: Yes.
Patrik:
Okay.
Tess: That was what was suggested to us yesterday.
Patrik: There’s
two things that stand out to me and then we’ll break things down a bit later but maybe for your own sake, I want to point out two things here. So they’ve given her blood transfusions.
Tess: 2.
Patrik: 2, yeah. And
they want to do a tracheostomy. That in and of itself is a sign to me that in spite of the rhetoric in terms of poor prognosis and potentially end-of-life and whatnot, they’re being proactive. So that stands out to me, which goes back to my point that I always make if you watch any of my videos, watch what people do, not what they say.
Tess:
Right.
Patrik: Don’t worry too much about what they say, watch what they do, that’s way more important. So, if they are giving blood and they’re doing a tracheostomy, that is a
sign to me that they want to continue, irrespective of what they’re telling you. Now, they’re probably painting a very negative doom and gloom picture, is that correct?
Rey: Yes.
Tess: Yes.
Patrik: Yeah, okay.
Tess: Severe brain injury.
Patrik: Yeah, yeah, I understand that. Yeah, yeah.
Tess: From anoxia or hypoxia.
Patrik: Yeah, I understand
that, okay? Again, they’re protecting their downside. What does that mean? Well, if they came to you and said, “Hey, we’re doing this, this, this and this and your daughter will walk out of ICU in 3 weeks,” and if it’s not going to happen, you could hold them liable by them painting the doom and gloom, they have your expectations very low.
The 1:1 consulting session will continue in next week’s
episode.
