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

Dad is on Propofol & Fentanyl in ICU! Should He be on Different Sedatives to Get Out of the Coma Fast?

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 with a breathing tube and on a ventilator in the ICU. Tess is asking how to have power and control over the intimidating doctors in the ICU.

My Daughter is Critically Ill in the ICU. How to Have Control & Power Over the Intimidating Doctors in the ICU?

“You can also check out previous 1:1 consulting and advocacy  sessions with me and Tess & Romeo here.”

Part 1

Part 2

Part 3

Part 4

Part 5

Part 6

Part 7

Part 8

Part 9 

Part 10

Part 11

Part 12

Patrik:  Hello Tess! 

Tess: Hi Patrik. 

Tess:  Can I just run through what I’ve written down?

Patrik:  Of course.

Tess:  Yeah?

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Tess:  Please. Okay, so we’re looking at Friday. Yes, they arrived at slightly before 2:00 PM and was told by the critical care receptionist, I was not booked in although I had definitely done so with the other receptionist on Monday. She said there would be an hour’s wait as there were other visitors on the ward, and suggested if we wished, I could see Sarah after 3:00 PM for an hour. She went on to suggest an update with the doctors if I so wished during the period whilst Romeo and I waited. I declined the opportunity. We left the reception area and waited elsewhere.

Tess:  I returned to the reception area at just before 3:00 PM and after a wait of about 20 minutes, was allowed to go and see my daughter. The consultant in intensive care medicine, who apparently did the tracheostomy operation was doing the ward round and was coming to Sarah’s bed with others just as I had washed my hands to approach Sarah. I waited behind the gathered group as the doctor mentioned another EEG should be done. After a brief visit to Sarah’s nurse, she turned to me, momentarily greeting me. I greeted her and asked her when Sarah would start being mobilized. She said it was not possible as she was not moving. At any point, obviously, if you have something to add, Patrik.

Patrik:  I do. I have two questions there. I have two questions straight away. So, are you saying you almost must make an appointment to see your daughter? Is that how it works there?

Tess:  Yes.

Patrik:  That’s ridiculous.

Tess:  I know. Basically, they’re coordinating it so that only certain families can go on the bay, and there are 5 beds. There are 5 beds in that critical area.

Patrik:    Is that because of COVID rules?

Tess: This is what they’re doing at the moment, yes.

Patrik: So it’s COVID. 

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Tess:  Yes.

Patrik: Right. It’s COVID rules, is it?

Tess:   Yes.

Patrik:  Okay. Other question, or other remark there, I should say. When she’s saying she can’t be mobilized because she’s not moving, I mean, that’s ridiculous. You only get someone moving that’s immobile by starting to mobilize them (laughs). Right. It’s the other way around.

Tess:   She received physio yesterday before my arrival.

Patrik:  It’s the other way around, not like the doctor says. I mean, they are already making excuses.

Tess:   I know from previously what you said.

Patrik:  They already making excuses.

Tess: That’s right. Anyway, coming back to what I’m saying. I commented I was glad to hear Sarah was 5 hours on, 5 hours off, the day before, and she asked me what I meant by that. I said, “5 hours breathing unassisted, and 5 hours assisted.” She nodded. She was busy, and it was a brief interaction. My point being is that it was pretty obvious that she’s going through the weaning process, and it didn’t make sense for her to be wondering what I meant by 5 hours on, 5 hours off. Anyway, that’s just by-the-by.

Tess:  I proceeded to be with Sarah and the nurse Hedda with whom you and I spoke on the phone. She was particularly kind towards me. I asked her various questions as follows, about her bowel movement because a laxative had been mentioned by the nurse the day before. She said she had had 2 good bowel movements. One had been slightly diarrhea, and the other one was a good bowel movement. She told me her potassium was low, which she’d mentioned to you, and you had written in the Skype chat, yeah? Patrik?

Patrik:  Yes.

Tess:  And would be supplemented. Now, I’m not quite sure if she’d already said that it was in the process of being supplemented, or that they were going to, because of the following. I asked if she thought it could be caused by kidney weakness. She said no, it was an electrolyte imbalance which they were trying to correct. Note that, that was mentioned to you in the morning, yeah. Earlier, Sarah had had elevated heart rate of 120, and she thought she may be in pain, so she gave her paracetamol. Then heart rate went down.

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Tess:  Her coccyx sore is fine. She does have a sore on her upper spine which is being cared for and dressed. She did not have the sore prior to admittance to hospital. The weaning was going well. She explained it would be tiring for my daughter. I asked about when the speak valve would be used. She said it could take her years, and then quickly corrected herself and said weeks for her to potentially speak.

Patrik:    Yeah, I’m following.

Tess:   Okay. I asked about her circadian rhythm, and how well she had been sleeping, and she had said she had been mainly awake, and it had been good, but no doubt would improve in due course.

Patrik: Okay.

Tess:  Feed, 500 ml per hour at present.

Patrik:  Hang on. That can’t be right. That can’t be right. 500 mls per hour can’t be right. That would be too much. 50, probably 50.

Tess:  Okay. Excuse me, 50 ml. Excuse me. Yeah, my mistake. I had about poor sleep last night. Please excuse me.

Patrik: That’s okay.

Tess:   Her right foot was turned in and jolting slightly. The myoclonic twitching around her eyes was there, but not her mouth, which was relatively still. And remember, I had mentioned that it was almost like she’s trying to speak quite fast with her mouth, previously. Her right hand was twitching and moving slightly to the right, so slightly in an outward fashion. Very slightly. Face relatively relaxed. Tracheostomy mask was mentioned for the next few days. Her eyes were open all the time I was there, focused, but I noted not as much as before the sodium valproate was introduced.

Patrik:   Right.

Tess:     I was told the size of the tracheostomy and that the balloon would be deflated on a gradual process.

Patrik:  Oh, good.

Tess:   The ventilator was in the off position at the time of my being there. It said off.

Patrik:   Yeah.

Tess:   The nurse was teaching 2 possible students about potassium in front of me, behind Sarah’s bed. I could hear what was being said, roughly, about it being dangerous and care needs to be taken in its administration. I heard 20 more per hour mentioned.

Patrik:  20 what?

Tess:  More, more.

Patrik:  Oh, probably 20 ml more. They’re probably talking about potassium.

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Tess:  Yeah. That’s what they’re referring to. I noticed Sarah watching me gently massaging her right foot. Her body was still except for twitching and movement in her right foot. And the nurse said she should come back to me, God willing. I mean, she was evidently a religious person. She could see at moments that I was sad, yeah, and I shed a tear on occasion. It’s very difficult not to in the situation, Patrik, and she was consoling, and she was kind to me generally. So, Anu was a great nurse, kind individual.

Tess:   Anyway, from the 1st, which is yesterday. Today I arrived at the reception shortly before 3 o’clock. Whilst a matter of a letter confirming Sarah being an inpatient was being dealt with, the doctor walks into the reception area and went behind the reception desk and on passing us, went out of the area. She did not say anything to us.

Patrik:  Right.

Tess:   So, we just stood there, yeah? She could have acknowledged me, but she didn’t.

Patrik:  I understand.

Tess:  She may not have recognized me, whatever.

Patrik:  Yeah.

Tess:  I asked the receptionist, for a subject access request form, like you suggested, and she seemed not to know what it was.

Patrik:  Okay.

Tess:  I visited Sarah, who was being cared for by a nurse. I initially tried to find out some from the nurse on duty. I asked how her low potassium was and she told me PRN, her potassium was in range.

Patrik:  Yeah.

Tess:  Her breathing was good, although a lot of secretion still, and samples were being sent to the lab because I’d said, “Is there infection?” And she said, “Well, samples are being sent regularly to the lab.” No info about arterial blood gas when I asked, and I started trying to ask her the questions on my piece of paper.

Patrik:  Have you taken pictures that you can send me?

Tess:  I tried hard to get pictures. It’s incredibly difficult for me because I had a crap phone on me. And also, I got one bit of footage from my foot, the floor, upwards on Sarah’s right, of the equipment and I passed over her head in the video, and I got the other part in a video capture. But other than that, whatever photographs I took, I did with such speed that I didn’t… Because I had, unfortunately, a shutter sound on the phone because it’s not a very good phone, and also the flash was on. So, what happened was it was obvious that I was taking photos behind the nurse, so it was really not appropriate.

Patrik:  You never make excuses for that. If you want to take photos, you take photos. This is your daughter. You don’t ask anyone for permission. You never ask for permission. You’re not doing anything illegal.

Tess:  Okay. Well, I’ll try and do that today with Rey’s phone.

Patrik:  Yeah, because I think we’ll get some more answers just by having pictures. Don’t be intimidated by them.

Tess:   Okay.

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Patrik:   This is your daughter. You are taking picture for your daughter. You never ask for permission for something like that. Never ever.

Tess:  Okay. Her breathing was good although a lot of secretions still. Samples to the lab. No info about arterial gas. I asked the Glasgow Coma scale. It was a 4 for eye movement, a 1 to verbal response and a 1 to motor response. No sedative. She stopped answering my questions when I got to the MRI CT scan question, and suggested my questions be answered by the doctors. She looked to her notes and she said that there was a safeguarding, and that all questions should be not addressed to her but should really be addressed to the doctors. I asked her about that, and I said, “Is it about me in particular? Is there a problem with me?” She said, “No. It specifically states that all questions should be addressed to the doctors, not to…”

Patrik:  So my response to that would be, what do they have to hide? The nurses know everything that’s going on. My response to that would be straight away, what do they have to hide? Why do you have to jump through hoops? That would be my immediate… You need to change your approach there slowly, without getting them off-side, but you need to make your expectations very clear. You’re not asking for anything unreasonable, not at all.

Tess:  Well, she did ask me about the questionnaire that I had.

Patrik:  So what?

Tess:  She’s not answering my questions as I mentioned. I mentioned the SAR form, the subject access request, and I asked about it, and she said she would try to find out about it from the head nurse. So, in the time that I was there, she didn’t, and it sort of went out of the…

Patrik: Okay, so do you remember I sent you that link for medical records, do you remember that?

Tess:   Yeah.

Patrik:  Have you shown them that?

Tess:  No, but I did have it on me.

Patrik:   Yeah, you’ve got to get the facts, because I tell you from experience, you need to put the pressure on. Because it’ll get them a while to get going, they’ll delay tactics. Been there, done that, seen it many times. You need to put the pressure on. Work with deadlines. Tell them, “Hey, I need access to medical records tomorrow by 3 o’clock,” whatever. Start doing that. Start doing that.

Tess:  Okay. Who should I be addressing that to? Because I’ve got a little bit more to tell you.

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Patrik:  Yeah, sure.

Tess:   … understand the context.

Patrik:  Yeah, sure.

Tess:  … of the situation and what I’m up against.

Patrik:  Yeah, sure. Nurse in charge, doctor, hospital CEO. Go wherever you think you need to go.

Tess:  Okay. Anyway, so the safeguarding. So, she asked me about my question, and I said it was for my information, I simply cut it short, yeah. She said she was not swallowing or coughing and that, that was probably why there had been an accumulation of secretions in the lower lung, which were suctioned, and less sound had been coming from that area. I asked her to quantify out of 10, and she said a 7. She confirmed they were sticky. So that whole mess hasn’t really resolved up to this point, as far as I’m aware. That was yesterday, anyway.

Patrik:  Right.

Tess: She said the subglottic cuff was in use, and saliva phlegm would not go into the throat.

Patrik:   Say that again. Saliva…

Tess:  The saliva phlegm..

Patrik:  Yeah, was not going…

Emma: … in the saliva was not going to the throat.

Patrik:  Yes, that makes sense.

Tess:   The mouth area.

Patrik:     Yeah, that makes sense.

Tess:  Well, how could she swallow if that were the case, though? How could she swallow her own saliva?

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Patrik: She automatically swallows… Well, not automatically. Because she’s got the cuff in the back of her throat, it means that none of her sputum goes down in the lungs because it’s blocked.

Tess: Right.

Patrik: Okay. So you don’t really need to worry about that at the moment.

Tess: Okay. She mentioned she could have aspirated at the time of the CPR.

Patrik:   Yeah, for sure. Absolutely.

Tess:  As I mentioned in passing that it had been said to me that food particles could have caused a lung infection in the first place.

Patrik: Okay.

Tess: And that had been mentioned previously, yes? By a doctor. I was told this previously by one of the doctors or nurses. I’m not sure. Inner cannulas have been changed and are being changed regularly.

Patrik:  Okay.

Tess:  Okay, so as I’m leaving the hospital, I went back to the reception and picked up 3 copies of a letter confirming Sarah being an inpatient.

Patrik:  Hang on, sorry.

Tess:  … signed by her doctor.

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