My Sister is in ICU on a ventilator with ARDS & the ICU Team Says She Cannot Be the Same Person as Before. HELP!

Hi, it’s PatrikHutzel 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 Sister Had Bypass Surgery And A Cardiac Arrest In ICU. Can He Recover?

You can check out last week’s question by clicking on the link here.

In this episode of “YOUR QUESTIONS ANSWERED”. I want to answer a question from one of my clients Joyce as part of my 1:1 consulting and advocacy service! Joyce’s sister is in the ICU on a ventilator for lung failure. Joyce asks why the ICU team says that her sister will never be the same person as before.

My Sister is in ICU on a ventilator with ARDS & the ICU Team Says She Cannot Be the Same Person as Before. HELP!

Joyce: Hey, Patrik.

Patrik: Hi, Joyce, how are you?

Joyce: I’m good. Hold on. Let me just text my siblings.

Patrik: Sure.

Joyce: Where are you based out of?

Patrik: I am based in Melbourne, Australia.

Joyce: So you have businesses all over, everywhere huh?

Patrik: Pretty much. This is an international issue unfortunately for people, especially in English speaking countries and I have worked in multiple English speaking countries, but it is an issue. ICU in English speaking countries I have found is fairly similar, and I’m talking to people in the U.S., UK, Australia every day.

Joyce: Right. You’re obviously seeing an increase with this, correct, with this pandemic?

Patrik: Look, I would say the issues have slightly changed, but I wouldn’t say the volume has changed. ICU is up, always full and always busy. The issues have slightly changed, especially with tracheostomies.

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Joyce: Yeah.

Jane: Hello?

Joyce: Okay, that’s my sister.

Jane: Hi.

Patrik: Good morning.

Joyce: Good morning. Jane, he is actually calling us from Australia, just so you know.

Jane: Wow, beautiful.

Joyce: Yeah, he has an international business. So Patrik, let me just give you an update as of today.

Patrik: Please.

Joyce: We spoke the other day, my sister has been in the ICU now 17, 18 days on a ventilator, going up and down on the setting. That’s kind of where we’re at right now. They have not offered us a tracheostomy at the moment, but when we had a conversation on Friday he said, “You are close there and you really need to know where your family stands. We don’t know if she’ll be a candidate, but the discussion needs to be made.”

Joyce: The way they were painting it for us was she’s not going to be the same person, is this the way he wants to live, obviously putting stuff, but I felt it was important to get an advocate outside from the hospital to really paint us the truest picture. Obviously, we don’t want our sister to suffer, we don’t want her to be in pain. We want him to resemble, the closest person she was before she went there. The facts is she’s 55, she has a diabetes, she did contract COVID, but she was independent, and still driving.

Patrik: Good quality of life.

Joyce: Great quality of life, being with us, going to the beach, the fullest you can imagine. Right as of this morning, none of the doctors has called us quite yet. They did an x-ray this morning and they’re noticing a little bit of something in his lung, like an injury. So they’re going to add someone to the team, but no doctor has reached out to us yet to tell us. Right now it’s small, so that they’re putting the sedation really, really high, so he doesn’t move.

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Joyce: Also, just another backstory, is yesterday she was heavily sedated that she took the sedation off at 12:00 and we talked at 6:00 and she still did not make a response. All these days she was making a response, but she didn’t make a response yesterday and she was tracking at 60, but now going 70. She had to increase the sedation at one point because the breathing was compromised, but she was unresponsive yesterday. All her vitals were okay, but because she was saying to us that there was so much sedation that she’s not giving us any reaction, her pupils are still making reactions. That’s it, up to date.

Patrik: Okay, what did you say, about 60% or 70%, is that the oxygen level or what did he say?

Joyce: When I think of numbers, that’s the ventilating setting. It’s at PEEP 8. She was going up and down, but 8 was the lowest number she was able to be at and the last couple days she was treading at like 45-50 being consistent and just in the last couple of days she’s like 60 today, 70, and no doctor has contacted us about it, so we don’t have a leg to stand to know exactly what’s going on in the lungs. When I spoke to the doctor the other day, who was not so friendly, I said to him, “Well, what’s our trache option?” He said, “We will let you know. You have no advocacy. You have to trust us that we’re doing everything we can. Frankly, you should not be telling us what to do and we will let you know. You just sit and wait and you will let us know,” and that’s when he said to me, I had a burning desire to reach out for someone who can be my advocate and tell me a little bit more, because that didn’t sit well with me, saying I have to wait for them to tell me what to do. That’s where we are.

Jane: Also, every sedation vacation they have done it hasn’t been so successful where he was able to do their command or whatever this whole time. Every time he did a… and it would just get her stressed, so they decided not to really wake her up as much anymore.

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Patrik: They haven’t got any concerns that there has been any neurological event like a stroke or there hasn’t been any talk about that?

Jane: No.

Joyce: No, they said because of her pupils still reacting and she’s still reacting on the tongue, they have not brought that up and she said it was typical not to wake up. Because she’s had so much sedation in her body, the nurse was not super concerned that she didn’t wake up. That third thing, I don’t know.

Patrik: Look, if people had a lot of sedation after 17 or 18 days, I agree, waking up is definitely not straightforward but even if it’s not straightforward, they should still think about issues, such as has there been a stroke, has there been another neurological event, to rule out that it’s just “hangover” from sedation.

Patrik: A quick few other questions. Has she been in prone position? Do you know what I mean by that?

Jane: Yes.

Joyce: Yes. A week ago she was really struggling at even using up to 100% the vent, and that’s when they were trying to prone her and that really did help her bring down the numbers and stay consistent, but the reason they stopped doing it is because they’re saying that she’s a little bit unstable because she was at like 60, 70 and only setting at 90. So they weren’t feeling confident about it.

Patrik: Okay. While she was proned, did she have any paralytics? Do you know what I mean by that?

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Joyce: No, explain to me.

Patrik: It’s basically when they prone people, it’s very, very uncomfortable and they often need to paralyze them medically, which means they have to use even more sedation because when someone is paralyzed with medication you don’t want them to feel anything.

Joyce: They said that they went very, very heavy on the sedation. My sister’s a little bit big and really couldn’t tolerate it, so they said, “We are really knocking her out today.”

Patrik: Okay.

Jane: Like she got a huge, huge bruise over here on the nose that it looks really infected to me this morning, I think that from proning her.

Joyce: It’s not an infection, it’s just probably a bruise from the skin.

Patrik: It’s easy to develop pressure sores when you are in a prone position because your face is lying head down. Have you had any face time?

Jane: Every day, twice a day.

Patrik: Right, okay, so you.

Joyce: We want to and it’s important and actually two nights ago when we spoke to her, the nurse brought down the sedation and it was the first that we spoke to her, he got, “A-ha,” her chest actually moved when we spoke, so we’re hoping that there some kind of reaction there.

Jane: She heard us maybe.

Joyce: I’m hoping she heard us. That was, I don’t know.

Patrik: With the chest x-ray today, what did they say? Some consolidation? Did they say water on the lungs?

Joyce: Okay, they’re saying something about secretion, they’re taking that out, the fluid. Today I know they were like 100% secretion where they were taking it out. I’m not sure if I’m using the right medical term.

Jane: Today, they said they found something in one lung, that it could be as a result of the ventilator. She didn’t want to tell us what it is because it was the nurse and because I don’t know if you know what’s going on here, but there’s not even a hospital bed, so they’re very bad and to get back to you could be hours and hours and it’s literally like a..

Patrik: War zone.

Jane: Yeah, there’s the war zone right here. So she goes, “Listen, I just have to tell you guys because they heard from the doctor that they found something in the lungs, but I don’t know if they’re going to operate, I don’t know.

Joyce: We have not been notified quite yet.

Jane: Nothing, we didn’t even get notified about it.

Patrik: So if they’re talking about taking out secretions of the lungs, that could be done just simple suctioning, but it could also be done by a bronchoscopy. Have you heard of that?

Patrik: Bronchoscopy basically means they’re putting down a video camera down the tube and they would suck out secretions, but also have a look in the lungs, what’s going on. They might just suction him like they do normally, do another chest x-ray tomorrow and if it hasn’t improved, then they might suggest a bronchoscopy.

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Joyce: They said they’re going to get someone on board to do something with a tube. She was tell us like if.

Jane: To put a tube or something.

Patrik: Oh, a chest drain, a chest tube.

Jane: Yeah.

Joyce: Something like that or if it’s bigger. They say they’re going to put someone on board that does those surgeries and be able to cut and put a tube.

Patrik: Yes, a chest drain to drain secretions that are sitting on the peripheries. Okay, that makes sense. Again, the longer someone is ventilated, especially with COVID and the ARDS. Have you heard of ARDS, A-R-D-S?

Joyce: Yes. Yes, and that’s what she has. She’s developed that, yes. Her lungs are now stiff.

The 1:1 consulting session will continue in next week’s episode.

How can you become the best advocate for your critically ill loved one, make informed decisions, get peace of mind, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?

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How to ask the doctors and the nurses the right questions
Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
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5 mind blowing tips& strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation
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How you need to manage doctors and nurses in Intensive Care (it’s not what you think)

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 PatrikHutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!