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 makingfast, 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 Critically Ill Mom is 5 weeks Now in the ICU & the ICU Team is Not Giving Us Any Sign that She can Get Off ECMO Support! 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 Juan, as part of my& 1:1 consulting and advocacy service! Juan’s mom is with a tracheostomy and on ECMO in the ICU. Juan is asking how long can his mom stay on ECMO in the ICU and what are the dangers of being on ECMO for so long.

My Mom is Still Critically Ill in the ICU and What Are the Risks of Being on ECMO Support for Too Long?

“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

Part 23

Part 24

Part 25

Juan: Yeah we’ll speak to them. Anything else you want to say?

Patrik: Not that I can think of. The sooner they can start feeding her, the better.

Juan: Yeah, okay we’ll talk to them.

Patrik: I’m sure they know that, but the more you can go to natural feeding the better.

Juan: Yeah, I think it’s just, I guess that’s the ICU, and there’s been a combination of things. The morphine was preventing her from digesting the food. Then you have the stress, then you have the antibiotics, then you have the stomach ulcer, and one thing lead to another.

Patrik: One thing leading to another.

Juan:  Okay. All right, we’ll speak to them and then we will just give you an update.

Patrik: Please, yes.

Juan: Okay. Thank you so much.

Patrik: Thank you so much, thank you. Bye, bye.

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Patrik: Hi Juan, can you hear me?

Juan:  Yes, I can hear you, Patrik.

Patrik:  Okay.

Juan: Yeah, so yeah, we went down and they told us that she desaturated when they were cleaning out the … When they were doing the suction they found a clot.

Patrik: Right.

Juan:  Which indicated that it came from the lung. And she’s bleeding from where they gave her the injection for the WBC that was bleeding a little bit too. So generally I guess the bleeding is the issue, because even when they changed her central line that was bleeding as well, if they found a clot in the lung that’s bleeding badly, the other one’s bleeding too, so that’s..

Mitzi:  Do you think the clot from that is coming from the lung or from the GI tract?

Patrik: I think it’s from the lung, but in order to find out they would need to do either chest x-ray or a CT scan.

Mitzi:  They’re doing a chest X-ray now.

Patrik: Right.

Juan:    Yeah, I think the CT would be too difficult right now.

Patrik: Yeah, no, I understand. I understand. Yeah. So you’ve seen her?

Juan:   Yeah. We just saw her.

Patrik:  Just saw her now. And what are they telling you in terms of what are their next step besides doing a chest x-ray?

Juan:  The next steps, well they dropped the heparin to 50, they can’t keep it low for too long, but right now they have. The next steps everyone’s been consulted, it’s to wait and watch for a little bit.

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Patrik:  Right.

Juan:  They’re doing the chest X-ray as well to get more information, see if there’s any new patch or anything like that. Anything else? No, I think, yeah, they’re just on standby just watching them closely.

Patrik:  Right and with the GI (gastrointestinal) bleed, they are keeping the pantoprazole?

Juan: They already gave it. Yeah. It’s ongoing. Yeah. Okay.

Patrik:   Do they start feeding? Have they started to feed?

Juan:  No, they said they won’t be feeding her until tomorrow.

Patrik:  Right. Are they going to do a gastroscopy?

Juan:   No, I mean, not right now. If it doesn’t settle, then they will, because putting something in is also another risk, especially with the bleeding.

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Patrik:  Absolutely. Okay. Kidneys?

Juan:   Nothing new has been said about the kidneys. We’re just going to ask for the latest ABG and I think they must have done a CBC this evening as well, actually.

Patrik:  I’m sure they have. I’m sure they have.

Juan:  Yeah, yeah.

Patrik:  But what you are saying, what they got from the lungs was just one clot or was it like fresh blood?

Juan:  They mentioned one clot, but I mean, when I looked at the … I don’t know, we’ll ask, I’ll just call after I hang up.

Patrik:  I think so because-

Juan:  Mina, do you want to call us and ask? Yeah, Mina just going to call them on the other line and find out.

Patrik:  Right, because A, one sort of blood clot is different to a fresh bleed from the lungs. There’s a difference there, you know?

Juan: Yeah, yeah, yeah.

Patrik:   But-

Juan:  yes.

Patrik:  But what I can see is, and this is probably the risk of someone being too long on ECMO, you’re having the risks that we always knew are apparent, looks like they are now manifesting. That’s right. That’s right. And what are they saying around those risks? Are they saying anything?

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Juan:   I mean, to be fair they tried this morning to wean her down with the ECMO as well. I think it’s pretty clear. I guess they’ll talk to us later tonight, let’s see how this goes. They’ve all been consulted, everyone’s on standby.

Patrik:   And she must’ve had some units of blood already.

Juan:   She had one through the day-to-day.

Patrik: Right. Okay.

Juan:  They did say that in certain, I think she used a term called DIC.

Juan: No.

Patrik:   Disseminated idiopathic coagulopathy. It’s bas-

Juan:  They said she doesn’t fully categorize as that.

Patrik:  Right. At the end of the-

Juan:  They said in those cases they transfuse plasma, but then that comes with its own risks. So that’s just a side note. Yeah.

Patrik:  How long has she been on ECMO now in total? Four weeks?

Juan:  That’s with air and breathing?

Patrik: Yes. Well, both really.

Juan:  She got onto the ECMO. Mina how many days ago? Almost about a month, getting close to five weeks.

Patrik:  Right, I’ve not seen someone on ECMO for almost 5 weeks. I haven’t. So the risks are becoming apparent, that’s not to say they should be giving up, but you know, it’s yeah … The side effects of the whole therapy are coming through at the moment, I believe. And what’s this pan-

Juan:  They just told Mina that they found clots and some blood.

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Patrik: And fresh blood.

Juan:  Fresh blood, yeah.

Patrik:  Right. Right. Look, God forbid, if she starts bleeding from the lungs, that’ll be very difficult to manage. They can manage that with ECMO for a little longer, but if she starts bleeding from the lungs that will be very, very difficult to manage.

Juan:  Yeah, yeah, we’re aware. If she starts bleeding from the lungs that’ll be difficult.

Patrik:  It’ll be very difficult to manage. Yeah yesterday, probably 24 hours ago it was looking so much better. And now it’s looking much worse.

Juan: I’ve just shared the chest X-ray.

Patrik:  Okay. Hang on.

Juan:  This is the one from the morning.

Patrik:  Hang on.

Juan: 6:03, that’s AM, right?

Patrik:  Hang on. I haven’t … Hang on, I just need to, just give me a second. Hang on, where are we? It’s just downloading now.

Juan:  It’s a new one. It is a new one.

Patrik:  Okay, so this is from, hang on … This is from, well not long ago is it?

Juan:  It’s from about an hour and a half ago.

Patrik:  Yeah, yeah, so was that before or after they told you about the bleed.

Juan:  Before.

Patrik:  Before. Doesn’t look-

Juan:  Wait let me see this message, just a second.

Patrik:  Yeah.

Juan:  So, not too long.

Patrik:  It doesn’t look to me like there is a bleed on that one.

Juan:  You would able to see a bleed in an X-ray?

Patrik:   No, you wouldn’t be able to see a bleed, but I tell you what you would see. You would see a white-out. There’s no white-out.

Juan:   Hang on, sorry, there’s a new one, there’s a new one.

Patrik:  Yeah, no it’s coming now. So this is the new one.

Juan:  Yes, the new one.

Patrik:  Hang on, hang on, hang on. It’s just downloading, yeah, it’s just downloading, I need to … What I need to do, Juan, I just need to see that in higher resolution. I just need to-

Juan:    Sure, you can call us back.

Patrik:  No, no, no I don’t need to call you back, I just need to email it to myself so I can bring it up in a higher resolution that’s all. Just give me a second.

Juan:  Okay.

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Patrik:  There’s not that much difference. Oh no, there is, there is. On the left side I’d say it’s almost the same, but the right side looks to me like there’s … Yeah, more clouded. Generally speaking the cloudier, the more, the less oxygen is going into the lungs. Right? Now, you can’t see a bleed as far as I can see, but what you can see is definitely cloudier. It could be a small bleed, but even a small bleed in this condition wouldn’t be great.

Patrik:  The blood gases will tell you everything you need to know, I argue.

Juan:  Okay.

Patrik:  The blood gases will tell you everything you need to know. Because if she keeps going up to 75% on the ventilator, that almost means they’re clutching at straws, because again she’s getting 100% through the ECMO already, they can’t give more than 100%. But they’re doing it anyway, because that’s what you do in a situation like that, you don’t want to diminish any life support in a situation like that.

Patrik:  And they think one unit of blood is enough?

Juan:  I don’t know-

Juan:  We’ll have to ask now, I mean that ran from morning till afternoon, it went on over many hours.

Patrik:  Right, right, okay well if that’s the case, the bleed is there, but it can’t’ be that bad either because if someone is heavily, heavily bleeding you’d be pumping in the blood.

Juan:  Yeah, I think it definitely looks like they’re like wait and watch, so I mean it’s clearly not gone yet to that complete crisis mode, like it was the night when they put her on ECMO, I think it’s they’re just waiting right now to just see what she does.

Patrik:  Yeah.

Juan: Discussions are probably happening in the background, I’m sure.

Patrik:  I’m sure there are. I’m sure there are.

Juan:   Anything for us to ask them? I’m just looking at your messages.

Patrik:  I don’t think there’s … I guess, they’ve already told you that they can’t keep the heparin off really.

Juan:  Yeah.

Patrik:  What about the other two blood thinners? Have they-

Juan:  They were talking about it, but I think the cardiologist was concerned about the..

Patrik:   Absolutely, absolutely.

Juan:  I’m sure that they’re discussing all of that right now.

Patrik:  Yeah.

Juan:  That’s probably what’s being discussed.

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Patrik:  The problem is you can’t really run ECMO without Heparin. You can’t really treat a stent on the heart without it..

Juan:  Yes.

Patrik:   Very delicate, very delicate.

Juan:  Yes. Okay, when we get the arterial blood gas and the CBC.

Patrik: Please.

Juan:   The latest ones, we’ll just forward them over. And any updates we’ll keep you posted, Patrik.

Patrik: Please, please, please.

Juan:  Okay. Okay, thank you.

Patrik:   Thank you so much, thank you, bye. Bye.

Juan:  Okay, bye.

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