My Mom’s been in ICU for 12 Months, Vent/Trachea, Dialysis After Liver Transplant, Can She Go Home?

My Mom’s been in ICU for 12 Months, Vent/Trachea, Dialysis After Liver Transplant, Can She Go Home?

Patrik: Twaney, can you hear me?

Twaney: Yes, I can hear you. Perfect.

Patrik: That’s wonderful. That’s wonderful. How can I help you, Twaney?

Twaney: Yes, I’ve been watching a lot of your videos and they’re really awesome, I want to firstly say that. I’ve been watching a lot of them probably this whole week. I was going to set up a one-on-one, but then I was like, “Okay, let me get on the live stream.” Sorry, I’m getting wordy.

So, my mom was in the hospital starting last year in June, and she had renal failure for her kidneys prior to, so she got a new kidney around 15 years ago or so. Then, recently she’s had a liver failure, so they had to have a liver transplant June 6th, 2023.

Now, she’s been in the hospital, literally the ICU, this whole entire year, and it’s been a very tough time for me and my family in regard to having to change up our whole overall lives. She’s been on the vent for a very long time as well.

When she was in the hospital, she started off, everything was going fine. Maybe the first month or so, everything was good. We were feeling like she was going to go into recovery. Then, she had twitching on the right side of her face, and we didn’t know what was going on. Then, all of a sudden, she had to be sedated very heavily. Then, they figured out later on that she had had a stroke. So, that was the first thing. Then, after that, they were trying to figure out how to get her back, good. But then, there was something going on with the brain and also, she was in serious depression, and then she started getting dependent on the ventilator, and fast-forward.

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Now, we’re in a position where her liver is better to be transparent. It’s not at the same place it was, but then now it’s so hard to get her off that ventilator. Every time we try to get her off the ventilator and they try to take her off the ventilator for a decent amount of time, she’s having the CO2 buildup. With the CO2 buildup, she can’t tolerate it for a long time. Then she has to get back down to high ventilator settings, and then we start this whole thing over again.

Then, also, she’s been in there for a year, so she’s prone to infections. Every time she gets an infection, she gets really sleepy. When she’s very sleepy like that, she has no energy, she has no strength, she can’t breathe down deeply. Her lungs are not strong enough. It’s just like this whole long cycle and it keeps on going and each and every time. Not that we’re scared, but we’re in a position where we don’t know if she’ll come out of infection if she is to have an infection again.

Last week, because it was her first full year at being at the hospital, I don’t know, the doctors came up to us and had a conversation with us, the liver team, as well as some of the ICU team, and let us know that they wanted to see about doing a couple of things. The first step would be DNR – Do Not Resuscitate if it comes to that point. The second one was getting to a long-term facility. The third one was for her to go home or go into, “hospice”.

Now, a caveat to this whole overall situation, she’s worked at this hospital for around 30 years or 35 years, and she was the head nurse at the emergency room. So, I do believe that they are giving her great care, as well as I do believe that she’s in a situation and position that they want to be “on her side” because she’s been in this hospital for so long and she’s given her life to them, so on and so forth. But I also know that they need to make money.

Patrik: Yeah, yeah. Twaney, just one more question. Did you say kidney transplant or liver transplant?

Twaney: Do you hear me now?

Patrik: I can hear you.

Twaney: Okay, perfect, perfect, perfect.

Patrik: Did you say kidney transplant or liver transplant?

Twaney: So, she had a kidney transplant… How many years ago, grandma? Around 15 years ago. She had a kidney transplant first. So, renal failure runs in my family. My grandma had it as well as my mom, so a lot of family members have it. After that, she had a cyst that was growing on the kidney, and it was pushing down on the liver. So, through that, she had to essentially be in a position where she needed a new liver, and it wasn’t operating at full capacity. Grandma, am I missing anything?

Grandma: No.

Twaney: Okay. Yeah, I’m saying everything, I think.

Patrik: Yeah. Yeah. Okay. I hear you. She’s still in ICU? She’s got a tracheostomy?

Twaney: She does have a tracheostomy as well. She’s in ICU.

Patrik: Yeah. Where are you located if I may ask?

Twaney: We’re located in Miami, Florida.

Patrik: Miami?

Twaney: Yeah. The hospital she’s at… I mean, I can say it out loud?

Patrik: It’s entirely up to you. You don’t need to.

Twaney: Okay. Yeah.

Patrik: You don’t need to give anything. The reason I asked for location is simply, is there a way for you to take her home? That often comes down to the availability of services.

Twaney: Yeah, so I do believe that there’s now an opening for us to take her home because the doctors are saying that they would want us to make a decision. They keep on pushing us to say something, but they also are saying that they want to do their best to help her out in the position she’s in. So, there is a possibility of taking her home, but the issue is that we don’t have the wherewithal to make sure that she’s going to be good because she’s on the ventilator. On top of that, she could get an infection. On top of that, if her CO2 goes up.

Patrik: Can you tell me a little bit more about why CO2 (carbon dioxide) is going up? Do you know why? Go ahead.

Twaney: Okay. I’m guessing that the CO2 is going up because she’s on the ventilator and she’s not getting the opportunity to breathe in as deeply as possible. So, I guess she’s retaining.

Patrik: The first question that I have when CO2 is high, is there a history of asthma or COPD (Chronic Obstructive Pulmonary Disease)?

Twaney: Did she have asthma, grandma?

Grandma: No, she didn’t have it.

Twaney: Okay. No COPD?

Grandma:No.

Patrik: Okay. What about, is she taking any opiates at the moment? Are they giving her any opiates such as morphine, fentanyl, oxycodone? Is she in pain?

Twaney: Yes. Okay. So, she was having pain, and she was having pain because she had a hematoma. So, they had to do a liver biopsy, and she was about to go to rehab. When they did the liver biopsy, maybe two days before she was going to rehab, something happened where a vein was touched, and she had a lot of internal bleeding. With the internal bleeding, she had a huge hematoma, and they couldn’t drain all of it, so it was in her stomach area. With that being said, I think that put a lot of extra months into her overall process, in all honesty.

Patrik: Okay. How long ago was that?

Twaney: It was late last year. Let’s say it was in December or let’s say January or February. The hematoma, grandma. The hematoma. The hematoma.

Grandma: Last year.

Twaney: When was it? Okay. It was maybe let’s say January or February.

Grandma: Not this year, last year.

Twaney: It’s fine, Grandma. It’s fine.

Patrik: So, as of right now, do you know if she’s getting any opiates, such as fentanyl, morphine, oxycodone, hydromorphone? Have you heard of those medications?

Twaney: I know that she was getting oxy at a certain point in time, but she doesn’t do it as much anymore, but they give her… I’m not sure specifically.

Patrik: Because I would try and find that out. But the other question that I have is, do you know what ventilator settings she’s on?

Twaney: It’s not-

Grandma: They change.

Twaney: Yeah, they change it all the time. She was on high ventilator settings. Now, her pressure support maybe is at 8 or 10. It’s nothing high, but it fluctuates. I think when she has the issues with the CO2 rising, then she needs it more. Then, when she doesn’t, they’re trying to wean her off, but they try to do it multiple times. When they’re in the weaning process, the issue is that maybe they’re weaning her too quickly or they’re trying to make everything work out. Now, they’re trying to do a really slow process. So, at certain points in time, she was going 12 hours and 14 hours and 16 hours in a day, and we’re so close to that 24-hour mark, but then all of a sudden, she goes back to square one. So, now she’s like, let’s say this week they can’t get her on T- piece, in all honesty. Then, maybe last week she was doing 4 hours, 5 hours a day.

Patrik: Okay. So, she was off the ventilator on a tracheostomy mask?

Grandma: She is sometimes. She’s off the ventilator for a few hours, so they call that rest period. She can breathe for herself, but after a while, she has to go back on the ventilator.

Patrik: Okay. But basically, what I’m hearing is there are periods where she’s off the ventilator completely?

Grandma: Yes, but she still has that tracheostomy.

Patrik: Yeah, sure, sure. But that’s the first step to getting off that ventilator. Once she’s off the ventilator completely, that’s when you can take the tracheostomy out. So, that is positive overall, even though I understand it’s been 12 months now, but that is positive that she does have time off the ventilator. Are they getting her out of bed? Are they mobilizing her?

Twaney: Yes. They take her out of bed every day and put her into the seat, at least.

Grandma: The chair.

Twaney: The chair that’s right next to her. We try to push for sunshine therapy as much as possible. Every time I’m there, I try to take her outside. I push for it a lot, a lot. Then, also I try to move her limbs as much as I can, but she’s really out of it every day or sleeping or very weak. So, I put her legs up and her feet up. But physical therapy doesn’t come maybe as much because she’s not fully up.

Grandma: She’s weak.

Twaney: She’s weak.

Patrik: She’s weak? Okay. She’s got a PEG tube and she’s getting nutrition through the PEG tube?

Twaney: Yes. Actually, they put her on a PEG (Percutaneous Endoscopic Gastrostomy) tube yeah.

Patrik: Is she losing weight overall or is she gaining weight?

Twaney: I guess she’s stable now. It’s like the same weight now. I mean, at the beginning, she definitely did lose weight, but now it’s just the same.

Patrik: Right. Okay. Are they feeling positive that they can get your mom off the ventilator? Do you think they have a plan to get her off the ventilator?

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Twaney: That’s an interesting question. I think that she’s in the grey area, what they told us last week. I mean, if another doctor came in, that’s outside the hospital and looked at my mom, they would say, “What are you guys doing? You guys might be fighting too much. There’s nothing that can be done at this point in time. You guys are taking it too far.” But then, also there’s times that she has some positives in what’s going on, and they see that there’s somewhat of a path to her getting better and getting out of the hospital. So, they said she’s in a grey area and they could see how she can get better. They could see how with infection, it could just knock her out really quickly.

She’s been fighting a lot of infections. She’s also been fighting just with all the other things that have happened to her in regard to the stroke and the hematoma and the botched liver biopsy. So, it’s just all these things that are happening, and it’s a series of unfortunate events. She also messed up her foot while she was in hospital because she fell as well.

Patrik: How does the stroke show up? Is she having a one-sided weakness?

Twaney: Yeah. It’s the right side of her body. The right side of her body. So, at the beginning, the right side of her face was twitching, and I have seen it, and it was a lot of twitching. So, at that point in time, and this is months ago, maybe now 10 months ago. Then, all of sudden they sedated her for maybe two weeks or so. Then, when she came out of it, just her right side of her face was really twitching. She was out of it every day, and the right side of her body wasn’t as strong anymore. She can’t really raise it. She can’t really raise her foot. I could noticeably see the differences when I was doing the exercises with her in the bed, she couldn’t really push the right side down as much as possible and so on and so forth.

Patrik: What about her cognition? Has that suffered from the stroke?

Twaney: Yeah. Okay. Well, let me even talk a little bit more about the right side of her body. So, at that point in time with the twitching, they had to see about seizures, and they were giving her Ativan when they felt like twitching was a little bit much, and she could possibly go into a seize because there were sometimes when she would just stop, and we would just get scared. So, neurology came down and they were trying to figure out a lot of different things in regard to making sure her mental status was there. She wasn’t necessarily fully there mentally. So, we had to do a lot of EEGs (electroencephalographs) to make sure, but they said that she wasn’t seizing when they were doing the EEGs, but they also said that she was extremely depressed, as well as with being in the hospital so long. I don’t think she was fully here with us for some time.

I think right now she’s at a more sustainable place, but she’s been crying a lot, every single day. It’s a lot of crying. Every time she opens her eyes, it’s insane amounts of crying. It’s really draining, to be transparent. We go every day, and we try to be a rock for her as much as we possibly can, but it can be a lot at times. But she is crying a lot and she’s saying that “She wants to go home,” but then I don’t know what the best alternative is and-

Patrik: Yeah. Do you know if someone has done a swallow assessment with her?

Twaney: Yeah, so they actually did a swallow assessment with her. A month and a half ago. They were trying to get her on it, and they were trying to start her back on liquids or maybe two months ago now. So, they did it and when they did the swallow test, she was not aspirating. Is that the word?

Grandma: Yes.

Patrik: Aspirating, yes.

Twaney: Yeah, aspirating. They checked her off to swallow and what not, but then right as they were doing that and giving her the opportunity to do liquids, and she took steps back again and she had to get off of that. That’s the tough part because every time we go forward, then we go back.

Patrik: So, she didn’t pass the swallow test at the time?

Twaney: No, she did pass the swallow test, but then when she got off of it, then she went backwards.

Patrik: Okay. The reason I’m asking for the swallow test in particular is… So, let’s just wave a magic wand for a minute and say she comes off the ventilator, then the next step is to remove the tracheostomy. Now the tracheostomy can only be removed if certain boxes are ticked. One of those boxes that needs to be ticked is to pass a swallow assessment.

Twaney: Yes.

Patrik: So, with all of that said, if she can come off the ventilator, it sounds to me like she has a chance to maybe have the tracheostomy removed because she has passed the swallow assessment at some point. So, I’m just trying to think ahead, if she can stay on that path of getting weaned off the ventilator, is it realistic for her to also have the tracheostomy removed at some point? With what you are sharing with me, I think it is within the realm of possibility. That’s assuming she can keep getting stronger. It breaks my heart listening to you that she’s in there crying every day.

I know there’s no quality of life in an environment like that. It’s just terrible. If it’s been 12 months now, it’s probably the time would be ideal to get her home. But by the same token, it has to be safe. It has to be safe, and you have to find someone in Miami who can help you to get to her home safely. Lo and behold, she will need 24-hour intensive care nurses at home to make that happen. As long as she has the ventilator or a tracheostomy or both. If she can be weaned off both, she won’t need ICU nurses at home. She’ll need a different level of care, but as long as she has a ventilator and/or a tracheostomy, she will need ICU nurses, 24 hours a day. Otherwise, it won’t be safe.

Twaney: Yeah. Yeah.

Patrik: Just one more question. She’s not on dialysis, is she?

Grandma: Yeah.

Twaney: Yes, she is now.

Patrik: She is?

Twaney: Yeah. So, they do it every day now. They got her off of dialysis and her kidneys were coming back fully. They came back fully, but then when they did the liver biopsy-

Grandma: One kidney.

Twaney: Oh, so, not both kidneys, but one kidney came back. When they were doing the liver biopsy, it really messed up the kidney. I don’t know if it’s going to knock back on again now, to be honest. They wouldn’t be able to do any level of transplant because her body is too weak.

Patrik: Yeah. No, that would be very difficult. Do you think they’re pushing you towards palliative care and end-of-life care?

Grandma: Not fully.

Twaney: Not fully. Not fully. I think they’re pushing us towards… They’re not fully. It seems like they’re even with it. You go into a long-term facility, or you go home.

Grandma: It depends which doctor.

Twaney: Yeah. Good. It depends on which doctor because the ICU team might have a perspective. The liver team, they’ve worked really hard on getting her through it, but then the issue is that she’s just been there for a very long time. So, I think both teams have maybe possibly different perspectives. The liver team maybe also wants her to go to another facility. I don’t know. I don’t know.

Grandma: She looks like she could heal, but everything is taking a long time. Like it is over a year now, but it’s not the same problem every day. Every time that something happens, it sets her back. However, I should have checked this out because they told me that she’s now on SIMV (Synchronized Intermittent Mandatory Ventilation).

Patrik: Yup! Yup!

Grandma: Honestly, I don’t remember what it does, but I think it’s the area that helps her breathing.

Patrik: If she’s in SIMV now, it means that the machine is pretty much doing all the work.

Grandma: Oh.

Patrik: Yeah. SIMV pretty much means she gets a rate from the machine every minute. That could be 10, it could be 12, it could be 20, whatever they deem. I would actually say it’s probably more towards the 20 side because her CO2 is high, which I would say with what you’ve shared with me earlier, that she had time off the ventilator a few weeks ago. If she’s now in SIMV, I would say that makes it less likely for her to be weaned off the ventilator. When was the last time she was off the ventilator completely, do you know?

Twaney: The last time she was off the ventilator completely was, yes, last week I’ll say. Maybe we were trying to get her up to 5 hours because I speak to the respiratory therapist every day and they come in and they see if there’s an order in for her to be off the ventilator on the T- piece. Then, she also has the voice thing in. She doesn’t speak as much now.

Patrik: Doesn’t speak? Yeah, yeah. Look, something might have changed between last week and now. Maybe her CO2 has gone up, which is why they’re putting her back on SIMV. I don’t know. I would need to look at the medical records or talk to someone directly, but that would be my estimate here.

Let’s just wave a magic wand and you wanted her at home. Again, I don’t know how much research you’ve done. We are also providing a service Intensive Care at Home, not in Miami at the moment. We could potentially help you privately with private nurses, but you would have to pay out of pocket. That would be very expensive, of course. But I’m not aware of a provider in Miami that can take someone home on a ventilator as complex as your mom. I’m not aware of it. We could do it, but it would be privately, if that makes sense.

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Twaney: Nah, that makes total sense. That makes total sense.

Patrik: But in terms of getting her home, logistically, I argue it’s doable. The sooner she can go home, probably the more she will improve. Just simply from on a psychological level, she’s literally desperate to go home.

Twaney: But then, my only question is if we take her home, because it wouldn’t be a situation where I wouldn’t want to take her home. Because I’m also looking at her quality of life and I don’t believe that her being in the hospital is the best thing, to be honest. She just looks up in the air and she doesn’t really want to watch anything anymore. It’s like the same old stuff. I know she doesn’t want to be there. My only thing is if we take her home, are we putting her at disservice as well, and possibly not being able to take care of her in the highest way possible, is my only question.

Patrik: Yep. So, the challenges that I can see with home care are if you set it up with 24-hour ICU nurses and you set it up with an RT coming and the doctor overseeing it, pretty much everything they’re doing there at the moment can be done at home. The only exception to that is if she requires vasopressors or inotropes, like epinephrine, norepinephrine, vasopressin. Do you know if she’s on any of them?

Grandma: She’s not on any of those medications permanently, but when she needs pain medication, I can’t remember. Sometimes she gets Dilaudid.

Twaney: Yeah, she gets Dilaudid.

Patrik: Dilaudid? Yeah, yeah. Dilaudid is just a pain medication. The medications that I just mentioned, epinephrine, norepinephrine – they are life support. They’re considered life support for low blood pressure. If she doesn’t have them, we’d argue she’s stable enough to go home with the right level of support, with the right level.

Twaney: Okay. That’s positive reassurance. Okay. Now, my last thing, I know you’re only an hour, but if I wanted to actually have a follow-up with you, is that possible as well?

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Patrik: Of course. Absolutely. Absolutely. Just contact me, either send me an email to [email protected] or just call me on one of the numbers on the top of the website, intensivecarehotline.com.

Twaney: Awesome. Your services are not in Miami either?

Patrik: Well, not yet. However, what we are good at is we are hiring nurses in different locations. For us, it really comes down to putting up a job ad and finding nurses, really. And we are good at that.

Twaney: Gotcha. Okay. I really, really appreciate you taking the time to listen to my story as well as answering all the questions, it was really appreciated.

Patrik: It’s a great pleasure, Twaney. I hope it all goes well, and feel free to reach out to me anytime.

Twaney: Awesome. Thank you, Patrik.

Patrik: It’s a great pleasure. All the best to you and your family. All the best.

Twaney: All right, ciao.

Patrik:Thank you. Bye.

Twaney: Bye.

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