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

Why Do I Need to be Demanding & Be in Control When Talking to the Doctors Whilst My Mom is Critically Ill in the ICU?

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 Juan, as part of my 1:1 consulting and advocacy service!  Juan’s mom is with a tracheostomy, balloon pump, and is now on VV- ECMO. Juan is asking how he can stay positive that a meaningful recovery is possible for his critically ill mom in the ICU.

How to Stay Positive that a Meaningful Recovery is Possible for my Critically ill Mom in the ICU?

“You can also check out previous 1:1 consulting and advocacy sessions with me and Juan 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 

Part 13

Part 14

Part 15

Part 16

Part 17 

Part 18

Part 19

Part 20

Part 21

Part 22

Kevin:    Got it. Also, Patrik, in the article you just sent us about the PCR CMV. It says the conditions as heparinized specimen.

Patrik:  Yep, sure. Well, that’s not only for CMV that goes for anything.

Kevin:    Would that alter the results by any chance.

Patrik:   It would potentially give inaccurate results. I wouldn’t worry about that because it’s got everything to do with how you take a sample. It’s got nothing to do with she’s on Heparin at the moment. It’s got everything to do with what syringes they’re using when they take a sample. That shouldn’t be a focus at the moment.

Juan:  Okay. I think that’s all our questions. Is there anything else?

Patrik:   Not that I can think of. There’s definitely been some improvement. There’s no question about that. The x-ray clearly shows there is improvement. The reduction in Noradrenaline shows there is improvement. They have to reassess tomorrow morning?

Juan:  Yeah. We’ll have this entire conversation with all the points that we just discuss. I think this evening we’re going to have that chat. And I’ll take it from there. And then see tomorrow, of course, how she’s doing.

Patrik: All right. Any other questions?

Juan:  No. I think that’s it for now, Patrik.

Patrik:  Okay. All right. Let’s see how it go and reassess tomorrow, or if you need anything later just reach out.

Juan:  Yeah. We’ll continue to share any kind of updates on the chats then you’ll have the updates.

Patrik:  Okay. Wonderful.

Juan:  Okay. Thank you, Patrik.

Patrik:  Okay. Thank you so much. All the best for now. Thank you, bye.

Juan:  Thank you. Bye.

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Juan:  Hi Patrik.

Patrik:   Hi Juan. Any updates for your mom?

Juan:  I’m happy that she’s sort of stable. They’ve been tapering off

the inotropes.

Patrik:  Yes, I could see.

Juan:  They did try to reduce the Atracurium, and then Midazolam also. But she was gasping and doing kind of what she usually does.

Patrik:  All right.

Juan:  Well, that’s been a consistent issue as you know.

Patrik:  Yes. Well, what are they saying are the next steps?

Juan:  So they’re taking off some of these antimicrobial, because I think they’re pretty clear that that is having an impact on the kidneys, especially on the WBC count, the magnesium is high, the creatinine is going up, the urea, and kind of all of that. Urine output is all right, but yeah they can sense that that’s sort of like an issue. So they were quite keen as well. So they’ve tapered off at least. So they’re going to start with definitely stopping the Ganciclovir today. And then we’ll wait for the next two cultures of the Candida to come back. And then if both are negative, then they’ll see even if the other medication would have been about seven or eight days by then, by weekend.

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Juan:  They’re holding off Septran, because in any case, in the test results, it says that she’s resistant to Septran, at least for that bug. So it’s not the one exactly what it does. For the PCP (Pneumocystis pneumonia), they were going to give Septran prophylactically, but they want to wait on that as well. Because last week, the results came negative for PCP (Pneumocystis pneumonia) both times. But yeah it came negative. So they’re going to see and look at the cultures and see what the results are like. But the doctor is continuing, we’re just going to carry that on, because it only stopped at about two days ago in any case. So we will run that course and see maybe by next week what’s happening. Maybe early next week, take a look again.

Juan:  She doesn’t have a high WBC. She doesn’t have a high heart rate. BP is all right, it’s holding as they’re tapering the inotropes. PCP (Pneumocystis pneumonia) is also low, trending down. So they’re not entirely convinced of the infection, and what exactly is going on. They said that the picture of chest x-ray was a little cloudier today, but they also said that it’s no exposure compared to the previous one. So they’ll take a look tomorrow. The ECMO doctor who handled the ECMO also took a look at her and said, again they were just going to wait and see, maybe let the blood gases improve further, and then see if they can reduce the dependence on the ventilator at all, and continue tapering off the ECMO if possible.

Juan:   I think as of now, we’ve seen some improvements in certain areas. And I think they’re going to watch how she handles this tapering off of at least the Ganciclovir and the Elores to begin with, and see what happens. And they’re going to change her nasogastric tube again to the other nostril, because it’s been about 15 days. And, yeah.

Patrik:  Oh, okay. She doesn’t have a PEG tube, does she?

Juan:   No, she doesn’t.

Patrik:  Has that been discussed?

Juan:  They did mention it actually. We’ll follow up and see what they were saying. But she doesn’t have any secretions anymore. And she’s tolerating her feeds again. They’re doing a drip feed and I think they said they’d increase the feed this evening because she passed a stool earlier today on her own. She’s tolerating the feeds.

Patrik:  And obviously if she’s passed some stools, that also means they had to clean her up, which means she didn’t have another episode.

Juan:   No. They’ve turned her every day since the event, and she’s been fine. She didn’t have any episodes before that, and she didn’t have any episodes after that.

Patrik:  Yeah, that’s good. That is really positive. So obviously, as you can probably already see, I’m fairly focused on the blood gas, because the blood gas pretty much will tell you a lot of what you need to know. Do you look at the blood gas?

Juan:  I think they’re also focused on the blood gases now.

Patrik:  They are, aren’t they?

Juan:  Yeah.

Patrik:  No surprises there. The blood gas will pretty much tell you everything, what’s going on. And also the blood gas will tell you where you need to look next.

Juan: Yeah.

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Patrik:  What I’m wondering is, they can’t really pin down to why the blood gas is improving or going backwards. They can’t really pin that down yet, can they?

Kevin:  So they said today that her blood gases have been fluctuating like this for a while now, and they’ve never really gone to really bad, but-

Juan:  But they’ve not made a dramatic improvement either. I think this is the first time, a small upward trend. Even if it is small, they’re just noticing it. It’s only been small and over two days. So it’s a bit early to put them together. Yeah, I think because other things are stabilizing and now as the Noradrenaline is coming off, and these two drugs are coming off, it’ll give them some indication, maybe like the process of elimination, they can start to somehow understand what it is that’s happening. Because otherwise there was so much going on, there was no way to figure out what’s causing what, with all that.

Patrik:  Definitely not. And that’s why we are so focused on the blood gas because PO2 and CO2 will tell you a lot of the story. Lactate will tell you a lot. Potassium will tell you a lot, because if potassium is going off, kidneys are failing. She is still making urine, isn’t she?

Juan:  Yes she is.

Patrik:  And what does her face look like today?

Juan:  It’s looking a little bit brighter than yesterday. She’s looking a bit better than yesterday.

Patrik:  Right, okay.

Juan:  She was a little responsive in the morning when we were talking to her. Even though she is on that 3 of Midazolam and Atracurium of 4, she was responsive again. And they did that test, I’ve sent you the results, the NSE (neuron specific enolase).

Patrik:  Yup, it is.

Juan:  And they said that’s a little bit high. It’s elevated. But at the same time, they said it’s not super elevated, and everything else seems alright. So it’s something they’re keeping an eye on. They said that it could be multiple things that would lead to that. They did the test after the event. They didn’t do it before. They said like troponin can go up after an event. Even this could go up after an event. So they just wanted to look at it and make sure it’s not like in the thousands, which is not. So yeah, I think they’re just keeping an eye on everything to try and understand her a bit better.

Patrik:  Yes. Fair enough. The reality is this, if theblood gases keep improving, she will get off that ECMO. If the gases are not improving, she won’t. It all hinges on the gases.

Juan:  Sorry, can I ask you again, Patrik, for PO2, what range do we want it to go to?

Patrik:  Yeah, anything above 70.

Juan:  Okay.

Patrik:  CO2 between 35 and 45.

Juan:   Okay.

Patrik:  I am surprised that CO2 hasn’t changed, which is good. I am surprised that the CO2 seems to be holding, again which is great. The PO2 is the concern. But again, I’m delighted. Anything above 70 is great. However, 70 is not a number where you can start reducing ECMO support. You need to see 80 and above for ECMO support to be reduced. And you need to see 80 and above consistently. And then when you reduce the support, ideally your PO2 doesn’t go down.

Juan:  Yeah, it remains.

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Patrik:  It remains, so yeah. With the kidney function, what are they saying? I can see the numbers, obviously. She’s making urine. If she remains grey, I would argue her kidneys are not working. That’s..

Juan:   But she’s definitely not grey. She’s not grey. She looks darker. By darker I mean like more flushed, like more reddish. Just darker. Not grey, I would say darker. And it was specifically her head compared to the rest of her body. They said that the edema has come down a bit today. It’s looking a bit better. Even the infectious diseases experts have said specifically yes, Ganciclovir can affect the kidneys. So let’s see now that it’s stopped, how she responds. So I think that’s really what they’re going to look at over the next two days, I guess, how the kidney and the rest of her response to the stopping of these two meds, and how the blood gases are affected as well. And just because now she’s finally got some stability, because the past days were a bit rocky, except yesterday and today she’s a little bit more stable.

Patrik:  Yes, definitely. And I’m just looking at the ECMO pictures again, because… Hang on. 2, 5, 10. So today the revs are 2, 5, 10, and yes 2, 5, 10 as well. Okay, so it hasn’t improved yet. Did you talk about the filter?

Juan: Yes. So with the filter, the humidifier, is that what you mean?

Patrik:  Yes.

Juan:   Yes, so she said the exact opposite of what you said. I don’t want you to think badly of it.

Patrik:  No.

Juan:  But they said that, “Oh we left behind humidifiers about 20 years ago,” because they went through a lot of infections. But they said that they’ve been changing the filter every day.

Patrik:  Yeah, sure. Okay, all right. I’ll find you a research paper about that. But that’s okay. I was expecting them just-

Juan:  They said it’s almost like it was a ludicrous question. They’re like, “Oh, back in the day we used to use them, then we stopped a long time ago. You were probably not born at that time.” So somewhat like that.

Patrik:  That’s all right. Yeah, I will find you some evidence. If your mom was awake or if a patient is awake, and you put them on the humidifier, and then you take them off the humidifier and you put a filter in, an awake patient will tell you of time. They say, “Put me back on the humidifier.” But anyway, your mom is not in a situation like that, and that’s okay. I hope your mom will come to the point where she can make some noise-

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Juan:  Right.

Patrik:  That’s right, and she can tell you. Anyway, I am concerned about that, because again, for an awake patient, an awake patient will tell you what they want, if they have the choice. But that’s all right. It is not the end. Well, it is and it isn’t, but there’s nothing you can do at the moment, I would argue. By the sounds of things, they don’t have that.

Juan:  No, they don’t have it.

Patrik:  Right, okay. With the-

Juan:  I think we’re probably the first people to ever ask the question. Yeah.

Patrik:  Probably. With the G-CSF (Granulocyte colony-stimulating factor) yeah that’s standard sort of therapy when someone is immunocompromised. I wouldn’t say standard therapy, but it is something that is often introduced when patients are immunocompromised. And I would argue your mom is immunocompromised after many days, weeks of steroids.

Juan:  Are there any downsides to it? They said it was just a single shot, just one.

Patrik:  That’s interesting that they say that. For most, what I’ve seen is for immunocompromised patients, I usually see it once a week. But-

Juan:  I think they’ll probably judge after they see what happens to the WBC over the next few days now that the drugs are off.

Patrik:  Yeah. And when I say immunocompromised, I am talking predominantly about chemotherapy. I’m not talking so much about steroids. But the Ganciclovir, I do know that some people might consider the Ganciclovir as chemotherapy too from memory. It’s nasty stuff.

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Juan:  Today, for the first time they were quite open and vocal about the effects that Ganciclovir has. We’ve been raising certain doubts about it for a few days now, but today, I think they were convinced as well that that is having an effect. We didn’t even ask them. They reduced the dose to half on their own this morning, probably when they saw the urea and the creatinine, et cetera. And then when they met us in the afternoon, they said, “Yeah, I think we can stop it.” So we didn’t have to raise it ourselves. They said it.

Patrik:  Right, okay. Hopefully it’s not going to impact on her. Because again, all I can say is clearly something is working. We don’t know what, but something is definitely working. Anyway, it is what it is.

Juan:  Yeah. I think this will also help them just do the trial and error. So if they see like there is a dip, and they said that too, then we can look at what they need to re-introduce as they’re taking it off and judge. And I think they want that insight as well, because with her they’re so confused. So I think it would help them.

Patrik:  Yeah, probably.

Juan:  Yeah.

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Patrik:   And what’s the outlook like? Are they still optimistic? What’s your impression there?

Juan:   The ECMO doctor who was handling her before was on leave for 5 days. So since Sunday, she’s been off. So she just missed out on everything that happened the last few days, and then came back today and was looking a bit disappointed, just because I think before she left, she thought things were getting better, and then all of this happened. She seemed sad I think. But the others looked quite happy today because today and yesterday she’s had improvement compared to the previous days.

Patrik:  Yeah, absolutely. The other positive side is they’re definitely weaning down the Noradrenaline and the Vasopressin. So there’s definitely signs that things are improving. The trouble-

Juan:  Yeah.

Patrik:  The trouble in ICU is its often two steps forward, one step back. It’s fairly unpredictable. But there is definitely signs for improvement.

Juan:  I think they’ve loved that with mom especially, and that she definitely does that, two steps forward one step back, one step forward, two steps back. So I think everyone’s just on edge.

Patrik:  Yes. A lot of patients in ICU, its two steps forward, one step back.

Juan:  Yeah.

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