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
How Can We Stand Against a DNR (Do Not Resuscitate) Status for our Daughter in ICU? 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 Tess, as part of my 1:1 consulting and advocacy. Tess’s daughter is on a breathing machine and has a tracheostomy. Tess is asking how to deal with the negativity of the ICU team about her daughter’s condition.
The ICU Team Express Negativity About My Ventilated Daughter’s Condition. How Can I Deal With It?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Tess/Romeo here.”
Patrik: Hi, Tess.
Tess: Hi, Patrik. I just want to inform you that my daughter is in an unstable state.
Patrik: What happened?
Tess: Because of the desaturation.
Patrik: Right.
Tess: And because there’s a secretion from the tracheostomy.
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Patrik: How long ago was she in ICU?
Tess: She left around the 4th or the 5th.
Patrik: Right. 5th, okay.
Tess: Yeah, the 5th.
Patrik: Okay, yeah. I remember the last time when we spoke she was in ICU, I do remember that.
Tess: What?
Patrik: I said last time we spoke I do remember she was in ICU. So she’s gone out of ICU on the 4th or the 5th?
Tess: Yeah, 5th.
Patrik: Right.
Tess: And then she’s gone onto the ward, the rehabilitation ward.
Patrik: Right.
Tess: Where she was in the ICU. And she just went down one floor. And I wrote a strong letter. To not only the neurological consultant but also the director of the unit, saying that we totally disagreed with any DNR (Do Not Resuscitate) that was put on Sarah.
Patrik: Yeah.
Tess: And the fact that the consultant and also one of the practitioners from the ICU, had mentioned that Sarah has been in a vegetative state and we completely disagreed with that. And I wrote the fact that she has basically been tracking very well, that she was holding her hand in mine and had bent it. Well, we just quoted from the diagnostic criteria for minimally conscious individuals, stating the different things that were showing that she would be minimally conscious and not in a vegetative state. Anyway, a couple of days later they sorted a meeting with the director, and the principal of… the physiotherapist, yeah?
Patrik: Sure.
Tess: Principal physiotherapist. And myself, Romeo and Rey were present and there was no formal meeting to it, we were just taken to one of the workout rooms and we sat round a… There wasn’t even a table anyway. The director said there’s no hope, and the neurological consultant basically said that Sarah, in his opinion, she was in a vegetative state and she was very poorly and that she didn’t have much prospects of living, she’s going to live a short life. And I said, “I totally disagree with that,” but he said she had damage to the frontal part of the brain, through the hypoxic brain injury, and that he assumes that she will probably be ending up in a care home, and this is before even the assessment.
Patrik: Right.
Tess: So we were very strong in our rebuttal of that and said, “Well, she hasn’t even been assessed yet.” And also I said that in the letter, which has gone to the director as I said. And we’ve been on the ward there since but in the past couple of days, I’ve been visiting her on a regular basis, she’s had improvement this past week.
Patrik: Right.
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Tess: Which I’ve been actually in attendance. And she’s been tracking and all the folks agree she’s not in a stable state. What happened is that she had a desaturation episode. They didn’t tell us about it until the afternoon a couple of days ago, and that was just by default because we were due to have a virtual video call with Sarah and I got the time wrong by an hour and I ran through to the ward an hour early to arrange it because I was ringing through the hospital because we’ve still got internet issues. And to cut a long story short, Sarah had an episode, an emergency where she had a plug on one of the bronchioles, a bronchial plug. And they deep suctioned her, or supposedly, according to doctor through the registrar. The story changed by what the neurologist said at a later point, that it wasn’t a deep suction, but nonetheless, that’s what she said.
Tess: And they’ve successfully been able to bring her to a stable state again. I visited her today and she was in a very… She’s myoclonus, an actual myoclonus, I think she might have… I think it’s called Lance Adams syndrome after hypoxic brain injury, which is particularly rare. Lance-Adams syndrome, which is particularly rare but it looks like it to me because I’ve been studying the matter, and it’s something that can subside with time. So it means that there’s a lot of jerking, and I asked the nurse, he was in the particular room that she’s on, on the ward, and he said that it could be from emotionality, from close contact from other people. Effectively, it’s overstimulation.
Tess: Anyway, it was quite concerning today because the heartbeat was 114 and her saturation was good, operating between 97 and 100. She didn’t have a temperature, because the previous day she had been set at a temperature of 38 and they were cooling her down and she was very cold actually to touch the day before. And then 36.7 today, the temperature, they didn’t seem that concerned about it because there weren’t seizures. And that it was just actually myoclonus from being moved about no doubt, and also potentially being in close proximity to the nurses. He said he’d noticed that when she’s left alone, they subside, and I know that they subside when she’s asleep. Anyway, pretty distressing today, shocking actually to me, because I wasn’t expecting that.
Patrik: Right.
Tess: I talked to her for a good hour, consoling her and giving her as much encouragement as being possible. And then I come away thinking things were, well, serious but okay, manageable, and then I get a call this evening at 8:30 or thereabouts from one of the sisters, who said that… She said they had an emergency after my leaving or thereabouts. So Sarah had a bit of desaturation, now, that means basically suctioning off the chest and everything, and she’s got a plug, a tracheostomy tube plug and her desaturation was 34. So they had an emergency situation there, the doctor, the nurse and everyone and they got rid of the plug. They suspect it dried out a bit, which could potentially make sense. So I asked about her hydration later on from the nurse, who was excellent and eventually called me back. And then I rang back 1:00 tonight for me, and to cut a long story short, Sarah is actually stable at the moment and she’s saturated. They’ve put her on 60% oxygen, Patrik.
Patrik: Right.
Tess: They had done that previously and then she came down to 28 in short order, and now they’ve put her on 60 again. The director’s been informed, they’ve got my number, if she was to deteriorate, they will give me fair warning of that and ring me. It’s just really… Oh yeah, and another thing, she had a heartbeat of about 130 around the time, and the breathe rate, and I think she meant breath rate, is about 22, and that is really sketchy. Prior to her falling asleep, it was about 27 I think he quoted. 22 and she’s saturated to 97. So as we were speaking, she was actually falling asleep. She didn’t get a very good sleep last night and she was awake from three o’clock in the morning till about 8:00 or something, so yesterday wouldn’t have been a very good day for her generally.
Patrik: Right.
Tess: She may well have been overstimulated, and all in all, it’s all… Oh yeah, that’s another thing, I’m missing out a very important part of all of this. After the bronchial plug which was dealt with basically, I got a call from the doctor who briefed me about the situation. She said that, “The consultant and the director wanted to have a call, would you mind having a video call?” Now, because obviously I’ve got so little ability at the moment to have internet connection, it’s just chopping in and chopping out, I thought, “Best not do that, just speak to her over the phone.” So they rang and they said that basically, they won’t let her go back into the ICU, they’ve come to the conclusion after a CT (Computed Tomography) scan that Sarah must’ve aspirated… As the neurologist, said, which I don’t believe, that, “She’s probably aspirated many times,” were his words. I’ve got a recording of it and-
Patrik: Sorry, and you never heard about it? This is the first time you’re hearing that she’s aspirated?
Tess: Yeah. No, no, she aspirated around the time just prior to the ICU, that’s what caused her desaturation.
Patrik: Right.
Tess: And they didn’t have a lot of support on the tracheostomy tube, so they’d had to put her into a safer position, which fortunately they did with me in a very pressured manner at the time. But the point now is that they’ve come to the conclusion… He wouldn’t tell me who actually said on the ICU that they’re not going to take her back but they don’t think it’s in her best interest and they just proposed that if she did get an infection that they’ll give her antibiotics on the ward and they’ll give her oxygen.
Patrik: Right, okay. Who is this director? Is this the neurologist? What’s her role?
Tess: It’s a man. He is the director of the rehabilitation unit of the hospital.
Patrik: Right, okay.
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Tess: She’s been transferred for rehabilitation. But the whole purpose of her being there is to assess whether she’d be suitable for a three to four months rehabilitation. So she was basically primed for a good situation potentially to get help but all of this just seems… The mistake that they’ve made is, they’ve changed the tracheostomy tube just prior to departure from the previous hospital and they’ve just basically missed that part, then put her in an unstable state.
Patrik: Right. Couple of questions there, Tess. Do you know if she has an inner cannula?
Tess: Oh, I don’t know, I’m not sure about that.
Patrik: Yeah. So when they’re talking about a sputum plug, it could be a simple plug they change, that they needed to change the inner… Do you know if they changed the whole tracheostomy tube?
Tess: They did, yeah. But another thing that-
Patrik: Are you sure?
Tess: What, that they changed the whole tracheostomy?
Patrik: Yeah, yeah. Yes, are you sure?
Tess: The last time it was quoted 7.5, which was the same diameter as it was at the previous hospital. Portex, that’s what’s written on the wall.
Patrik: Okay. Okay.
Tess: And another thing that’s interesting to know is that this neurological consultant, he’s not even on the staff at this place.
Patrik: Right.
Tess: He’s just a floating advisor but he’s obviously on my daughter’s case as it were, and his prognosis is like a self-fulfilling prophecy.
Patrik: Yeah.
Tess: This whole thing, from the beginning I’ve been fighting in what was a very civil way and trying to be as good as possible with him so I don’t alienate him. But at the same time… What was I going to say to you? Yeah, talking about this desaturation today, apparently it was 82 due to the tracheostomy tube plug. Anyway, what do I do?
Patrik: Yeah. No, no.
Tess: The saturation is up, down.
Patrik: Yeah. Look, what you need to do is you need to formally challenge this, right? And you could start by writing an email to the hospital, hospital administration. Or you could go harder and you could take this to court. I don’t know, we could just have a chat to them, that could be another step. We might just have a chat to them and remind them of their duty of care. You and your husband, you have full guardianship for Sarah, is that right?
Tess: I’m her next of kin.
Patrik: Yeah. No, no, I can’t remember whether we spoke about this, I would make sure you are the legal guardian, I would do that as a next step. I think we might’ve touched on that last time, I can’t remember. If I was you, I would go to-
Tess: I remember, yes. I know you were very strong to say-
Patrik: Yes, I would do that. Because I’ll tell you what could happen, if you were to take this further, and let’s just say worst case scenario, if you were to take this to court, the hospital might challenge you on your current… What’s the word? Relation. They can’t challenge you, obviously you’re her mom but I would make sure that you are the legal guardian full-stop, because the hospital might challenge you on that eventually, especially if there’s dispute around what’s best for her.
Tess: Well, this is the thing, I’ve kept an even keel with the situation. I’ve been polite and friendly to them.
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Patrik: There are times when maybe politeness… I’m all for making friends if you can but if you think this is not going in the right direction, then the first thing that I would do is make sure you’ve got full guardianship, or you and your husband, full guardianship. And then potentially… And irrespective of that, you should write to the hospital but I would go potentially to court with that if you think it can’t be resolved amicably. Do you have access to the medical records?
Tess: No.
Patrik: I would get access to the-
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Tess: I’ve been gleaning as much as possible from those that I can, the nurses.
Patrik: Yeah, you need to get access to the medical records.
Tess: Well, I’m just juggling as it is the whole process of having to travel a distance to get to her.
Patrik: How far?
The 1:1 consulting session will continue in next week’s episode.
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Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!