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
My Daughter had a Cardiac Arrest & is Critically Ill in the ICU. Why Does the ICU Team Talk About the End of Life for Her So Soon? 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 my clients Romeo, as part of my 1:1 consulting and advocacy. His daughter is with a breathing tube and on a ventilator in the ICU. Romeo is asking how to stay positive whilst his daughter is critically ill in the ICU.
How Do I Stay Positive Whilst My Daughter is Critically Ill in the ICU?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Romeo and Tess here.”
Part 1
Tess: Well yeah, I’ve
got a rough idea. They effectively mark the person as basically, if they go into a critical state they’re not resuscitated.
Patrik Hutzel: That’s right, but you mentioned earlier that when they turned her and she became unstable that they were resuscitating her.
Tess: That was in the other hospital, yeah. But they were making effort to actually stabilize her and they achieved that. And now, as I said, she’s off all of the other meds
except for a feed. She’s got a tube coming out of her right side which is draining, they’re taking off excretions of her lung cavity as of three days ago, which have been green. They’re basically giving the impression on the upper right lung. There was a puncture in the process, one of the rib cages was broken in the process potentially of the CPR, it was fractured, which would obviously be in the process of healing. There’s a drain coming out of her right side as of I think it’s three days ago, I verified that. And also, what other things? Swelling going up and down in the limbs.
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Patrik: Sorry, Tess,
so she had a chest drain, is that what you’re saying?
Tess: Yeah.
Patrik: Okay, and
that’s been removed?
Tess: No, it hasn’t as of 3 days ago. I don’t know what the situation is now because I didn’t get to see her yesterday and that wasn’t risen in the
conversation.
Patrik: Okay.
Tess: She’s had
perfuse swelling in her eyes which have gone from being bad. She went through a period of extreme conjunctivitis after 3 days of the incident, where her eyes were bulging out and a yellow pinkish color and it was very concerning but that’s gone down and resolved completely. Her eyes are basically looking fine. As of Sunday, I was being really attentive to try and see if I could get her to track on me. Her left eye’s basically half open, 3 quarters open, with being able to see a dilated pupil
with her iris obviously looking forward. She was fixated on a position of basically looking forward. Her right eye was very much slightly less open than the other.
Tess: I was really looking intently into her eyes as I was stroking her hands, I did seem to feel… I did sense that I was basically getting intelligent signs from her. When
I was asking her to please try to squeeze my hand, she wasn’t but her hands weren’t in necessarily a swollen state, only very marginally, they’d been a darn sight worse previously. And on her right-hand side where the drain was, I was holding her hand and she moved… She’s got myoclonic seizure. Well, they say… Yeah, twitches and all that but somewhat shuddering going through the upper torso and it is affecting her… A little tremor going on in her hand and then she moved her hand 3x distinctly
upon my asking to give me a sign. On the right hand.
Tess: And I mentioned this to specialist yesterday and they poo-poohed it, like, “Oh well, it could be the tremors,” sort of thing. And in spite of everything, Rey has
been very thorough in trying to research as much as possible, thank goodness, and he found out about the myoclonic seizures and that there’ve been studies that they actually can be caused as a consequence of the fentanyl and the propofol.
Patrik: I was coming
to the seizures in a minute, I was going to talk about that. Can I just ask, you mentioned in your text earlier, so they deem her as a GCS or Glasgow Coma Scale of 3? Is that right?
Tess: That’s what we’ve been told, yeah.
Patrik: Okay. And her
pupils, are they reacting to light?
Tess: Yes, they are. And I was told that she could hear. And one of the nurses said that she could hear, so I’m getting conflicting…
Patrik: Sure. Are the pupils equal in size?
Tess: In fairness,
I don’t think so as of 3 days ago. No, there was a differentiation.
Patrik: Okay, right. But they are reacting to light. Has there been a cardiology review?
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Tess: Yes, she had apparently. Well, there must’ve been because when she had the incident, afterwards we were told that there was a very, very slight mild effusion on the
heart but her heart has completely resolved as far as I’m aware and from what I’ve been able to gather from the nurses so far. So, her heart is basically all right.
Patrik: Have they done ultrasound of the heart?
Tess: I’m not entirely
sure.
Patrik: Do you know whether she went to catheter lab? Did they put a stent up her heart, do you know?
Tess: No.
Patrik: Or did they
put a camera up?
Tess: Nothing like that.
Patrik: Nothing like
that.
Tess: As far as I’m aware because they’ve obviously been doing this, that and the other behind my back, they’re not really consulting.
Patrik: Look, no, no, the reason I’m asking is… So, do they know the cause of the cardiac arrest? Have they given you a cause?
Tess: They’ve given a
cause, yes. Dan basically came to explain that the reason why it happened was because of lack of oxygen at the time of the escalation of the lung infection.
Patrik: Right.
Tess: Which came on that
same week.
Patrik: Okay.
Tess: Or it could have
been a consequence of the CPR or Cardiopulmonary Resuscitation, Patrik, who knows? I don’t know.
Patrik: Look, when a cardiac arrest happens, often people before they go into ICU, they actually go to the catheter lab where they put a catheter up the lab to see what
happened. So that didn’t happen.
Tess: I don’t think that’s happened.
Patrik: Okay.
Tess: No mention of that.
Patrik: Yeah, okay,
fair enough. So coming to the myoclonic seizures, so what you are saying is she’s been off sedation now for how many
days?
Rey: 5 days.
Tess: Well, since
then she’s been on about a 30.
Patrik: Okay.
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Tess: She was 84 previously when she was at the other hospital. So, she’s been oxygenated all the way along since then.
Patrik: Yeah, okay. My question was how many days has she been off sedation, off the propofol, off the midazolam?
Tess: Well, supposedly about 5.
Patrik: 5 days, okay. And
prior to that she was on propofol, midazolam, fentanyl?
Tess: Yep, but the midazolam was used as a weaning process, I could see from the propofol and the fentanyl.
Patrik: Okay. And all she’s on now is Panadol or paracetamol.
Tess: Supposedly, yeah.
Patrik: Okay. And they’re telling you as of today or as of yesterday her GCS Glasgow Coma Scale is 3?
Tess: Yeah.
Patrik: Okay. And the
myoclonic seizures, what does that look like to you?
Tess: Twitching around the face, around the eyelids especially.
Patrik: Twitching, yeah.
Tess: Yeah.
Patrik: Spontaneously
or when you talk to her?
Tess: No, spontaneously.
Patrik:
Okay.
Tess: Otherwise, it would cause great difficulty for anybody to assess whether she was actually trying to communicate by blinking.
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Patrik: Of course.
Tess: And, the breathing tube going into her mouth prevents her from speaking.
Patrik: Of course.
Tess: So, I’ve tried to
reassure her, I’m treating her as if she’s alert and perfectly consciously aware, although she’s got very low muscle mass on her upper body. She was frail at the latter part before the problem arose and I suspect that it would mean that she would have difficulty raising her arms because of a considerable amount of water swelling anyway. Because effectively, she’s going through a refeeding process, hasn’t she been?
Patrik: Oh yeah.
Tess: Because that’s what they’re doing, yeah? She’s on 40 ml on an hourly basis as of 2 days ago.
Patrik: Right.
Tess: And she was 15
at the start.
Patrik: And she’s absorbing?
Tess: Apparently,
yes.
Patrik: Okay, and she’s opening her bowels?
Tess: And her bowels
are working.
Patrik: Okay, great. Just coming back to the..
Tess: And they’ve got her on insulin, excuse me, they’ve got her on insulin because Dan said that they suspected that she actually had been diabetic. But she’d done everything in her power to actually help herself from being discomfort in in her kidney area, yeah? And that resolved and she was much better, and she generally did a real clean out of her system and as a consequence, with the counsel of other learned thinkers, she was able to
resolve a lot of her issues, yeah? So, she was on quite a high sugary diet because obviously she was frail, she wanted to gain weight and unfortunately, she didn’t seem to be gaining weight. So, we adopted that concentrated calorific intake from what she wanted to do, which was to eat more sweeter things which could have then driven up the potentiality for it to be read as diabetes.
Patrik: I can tell you a lot of patients in ICU that are not diabetic end up on insulin temporarily, so I’m not worried about that one way or another.
Tess: Okay.
Patrik: So, half of
critically ill patients in ICU end up on insulin whether they’re diabetic or not. The reason for that is simply when someone is critically ill in ICU, the body responds to stress and will respond to increased sugar production.
Tess: Exactly. Yeah, I understand about that.
Patrik: So, I’m
not too fussed about that, I’m not too fussed about that.
Tess: Yeah, stress hormones and everything.
Patrik: That’s
right, stress hormones, adrenaline rush and all of that. So just quickly coming back, you mentioned that she had swollen eyes.
Tess: Yes.
Patrik: Did she also have a
swollen face or just the eyes?
Tess: No, just the eyes.
Patrik: Just the
eyes.
Tess: And I was told that it was conjunctivitis.
Patrik:
Okay.
Tess: But that didn’t make sense to me how it could be so quickly presented, it looked very bizarre. It was bulging out of the whites of the eyes in a pinkish orangey
way.
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Patrik: Right.
Tess: Anyway, it’s
resolved, her eyes are all right now.
Patrik: Okay. Let’s just go back to the myoclonic seizures, I have seen them a lot of post-cardiac arrest when parents are off sedation. I’ve seen them a lot. Did she
have cooling therapy?
Tess: Not to my knowledge.
Patrik: Yes. Have you
heard of cooling therapy?
Tess: I heard you mention it or somebody else mention it, something along the lines of research. Oh yes, it was about the medical research that they do, I remember it’s what
you spoke of in that particular video.
Patrik: They do sometimes cooling therapy after out of hospital arrests for 24 hours. Basically, the body gets cooled down to 33 degrees for 24 hours to protect the organs
after cardiac arrest and then slowly rewarmed, but that hasn’t happened as far as you’re aware.
Tess: Not to my knowledge. Every day that we’ve seen her. She hasn’t been in what I would imagine a cooling situation would be.
Patrik: Look, you probably wouldn’t even notice because all they do is they put her on a cooling mattress.
Tess: Right.
Patrik: Right, you probably
wouldn’t even see it. The only thing you would notice is that when they warm her up, you would notice a warming blanket, that’s all.
Tess: Interesting. Well, I did actually notice that when her right arm was risen up 3 days ago, it was actually quite cold, her arm.
Patrik: Yeah, but the cooling therapy.
Tess: And I wondered
for that, and her hand.
Patrik: The cooling therapy happens right on admission for 24 hours.
Tess: Right.
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Patrik: It happens in
the first 24 hours.
Tess: Myoclonic.
Patrik: Myoclonic
seizures. So I’ve seen them a lot after cardiac arrest and hypoxic brain
injury From my experience it’s not a good sign, it usually is a sign that the brain is severely damaged but again, that doesn’t mean she can’t get out of ICU and she can’t recover, I’m just telling you my experience there. Are they giving her anti-seizure medication?
Tess: They tried
that, and I think she’s currently on something.
Patrik: She would be.
Tess: Yeah. Because I
said, “From 0 to 10,” and I asked categorically, “From 0 to 10 can you please give me an idea how badly would she be seizing? Or rather, how badly would she be twitching if you didn’t use the medication that you had?” And the consultant said that it would increase the twitching.
Patrik: Right.
Tess: And she wouldn’t give a number, which would have been easy for her to do but she didn’t.
Patrik: Of course, of course. Do you know what she’s getting for anti-seizure medication? Is she getting Keppra? Is she getting phenytoin?
Tess: No, I don’t know but Actrapid, does that sound familiar?
Patrik: What’s that?
Tess: Actrapid.
Patrik: Actrapid is
insulin.
Tess: Yeah, that must be the insulin, related to the insulin.
Patrik: Yeah, it’s insulin. Actrapid is insulin.
Tess: Okay. No, I’m not sure, I don’t know what the name is.
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Patrik: That’s okay.
It’s probably either Keppra or phenytoin, one or the other, most likely. So the way I’d like to approach this now is more or less from head to toe, To get a better understanding. You’ve shared a lot already GCS or Glasgow Coma Scale 3, pupils reacting to light but probably not equal, no sedation, only on Panadol. Do you think she’s in pain?
Tess: They say she
can’t feel pain, but I don’t believe that because why would they give her paracetamol?
Patrik: I’m not interested in their opinion with this question, I’m interested in your opinion.
The 1:1 consulting session will continue in next week’s episode.
