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
Mom Has Been off Sedation for Four days But Why is My Mom Not Waking up. Please 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 Lorietta, as part of my 1:1 consulting and advocacy
service! Lorietta’s mother had a cardiac arrest and currently on tracheostomy. She is asking what is the best long term option for her mom, a nursing home or bring her home.
What is Best for Mom with Tracheostomy After ICU: Home or LTAC?
Lorietta: Hello.
Patrik: Hello. It’s Patrik from intensivecarehotline.com, how are you?
Lorietta: Hi, how are you doing?
Patrik: Very good thank you. This is Lorietta is it? Is that how I pronounce your name?
Lorietta: That is correct.
Patrik: Right, right. Obviously we’ve got a little bit of time and I’ll be listening to you and then I can tell you how I can help you.
Lorietta: Thank you.
Patrik: And lay out the options for you. So, we’ve spoken briefly last week, haven’t we?
Lorietta: We did and you’ve sent me some information and I appreciate it.
Patrik: Right, right, yeah.
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Lorietta: My mother had a cardiac arrest on March 25th, she was resuscitated, unconscious and she’s on a ventilator. We’re just trying to figure out what is best for her long-term. You have ventilator long-term facilities in this area and we don’t know if we qualify due to her insurance or going home. But going home, you have to make sure you have the expertise. You need a generator and things in place. And I’m not a medical doctor or nurse.
Patrik: Sure, absolutely. Let me ask you, so she’s been ventilated since the 25th of March. Does she have a tracheostomy or a trach?
Lorietta: Yes. A tracheostomy and a ventilator.
Patrik: Okay. When did they do the tracheostomy?
Lorietta: They did the tracheostomy on the 4th of April.
Patrik: 4th of April. Okay. With the cardiac arrest, did she sustain any brain damage from that?
Lorietta: They believe so, yes.
Patrik: They believe so. They believe so or is there evidence?
Lorietta: They’re saying from an MRI but they can’t tell me the degree. And they haven’t done any imaging since March or early April.
Patrik: Right.
Lorietta: Any additional imaging, but they really can’t tell me anything definite.
Patrik: Okay. Is she responsive to you?
Lorietta: Sometimes she will blink her eyes to me and the other night it was like she was grunting. And her caregiver said, she opened her mouth wide when she was wiping her mouth. But the doctors will just say, “Oh, it’s myoclonic twitching,” it’s hard to tell.
Patrik: Sure.
Lorietta: Correct.
Patrik: How long has she been out of an induced coma, do you know?
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Lorietta: I don’t know if it was induced or … She was unconscious when they found her, when her caregiver found her.
Patrik: Right. So you don’t know whether … For a period of time she was induced in a coma while she was in intensive care. Do you know whether she was in cooling therapy to begin with?
Lorietta: No, I found out about that option a week later and I was not given that option when she was at the emergency room, which bothers me.
Patrik: Okay. What options have you been given from a hospital end, if any?
Lorietta: Not much. Basically a long term ventilator facility, if she qualifies or going home. Those are the only options I’ve been given.
Patrik: So, weaning her off the ventilator while she’s in ICU is not an option they are pursuing?
Lorietta: They tried to do the trials to run those machines but she didn’t do so well, and was in distress. She was on CPAP for example during … Yeah, CPAP and she did pretty well during the day but at night not so well.
Patrik: How long ago is that?
Lorietta: We had an episode last week where the respiratory therapist, they were in pretty much busy all night because of that. So they put her back on full vent and she had an Atrial Fibrillation this week and they gave her a blood transfusion for
her haemoglobin.
Patrik: Okay. So with that episode last week, was that the first time they tried? Why did they try last week? Why didn’t they try two weeks ago? Why are they not trying again, you know?
Lorietta: They had been trying to wean her off. But last week it was pretty bad with the distress and the oxygen saturation dropping.
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Patrik: And do you know, have they tried the week prior, two weeks prior? Do you know?
Lorietta: I believe so. That was the ultimate goal coming to TOPCARE was to wean off of the vent.
Patrik: Sorry, is she in TOPCARE now?
Lorietta: Yes, she is an TOPCARE now.
Patrik: I misunderstood. I thought she’s still in ICU.
Lorietta: She was moved from the cardiac ICU, April six and she’s been at TOPCARE since April six.
Patrik: I see. My understanding was she was still in ICU. Okay. Are you happy with the care she’s getting in TOPCARE?
Lorietta: Not necessarily.
Patrik: Okay.
Lorietta: But it’s our option, we don’t live in a large city like New York, Los Angeles or Chicago. This is about the best that we can get.
Patrik: I question that, I question that. If you had contacted me around the 1st of April and you had told me your mom is about to get a tracheostomy to go into TOPCARE, I would have said, “Yep, probably get the tracheostomy. Do not go to TOPCARE. Never ever.”
Lorietta: Oh.
Patrik: That would have been my advice then.
Lorietta: Yes.
Patrik: And, we have strategies to avoid TOPCARE. If you look on our website, we have numerous case studies from people who have horrific feedback about TOPCARE in general. Horrific. So my advice would have, if you had contacted me, 1st of April, my mom is about to get a tracheostomy and then TOPCARE, I would have said, “yeah, probably tracheostomy but not TOPCARE. Let’s look at other options.” And the other options is to start negotiating. People don’t know what they don’t know.
Lorietta: And what do you mean by negotiating?
Patrik: We’ve helped… Look, the only place from my professional experience and also a professional opinion to wean somebody off the ventilator is either intensive care or intensive home care.
Patrik: TOPCARE is a better version of a nursing home, as you would have probably seen by now.
Lorietta: Yes. I agree.
Patrik: So a critically ill patient go from intensive care with intensive care specialists, doctors, nurses, RTs? How can they go to a TOPCARE where you don’t have ICU units, where you don’t have ICU doctors? How is that going to happen? It’s not as you would have seen by now.
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Patrik: But again, people don’t know what they don’t know. You wouldn’t have known what to look for. You wouldn’t have known what to ask for. You’ve probably been quote unquote sold on. Yep. TOPCARE is the best next step. The reality is TOPCARE is a vehicle to empty ICU bays that they need and it’s the vehicle to get cost down. But that comes as a dramatic drop in care. In quality care.
Lorietta: Well, we’re very disappointed because she saw the neurologist as the CCU. That’s the cardiac ICU, but they have no neurologist. The neurologist have privileges at TOPCARE.
Patrik: Yeah. Not the price, not the price. And those other things people need to ask before they make such major decisions. I would be highly suspicious of a TOPCARE wanting to treat Atrial Fibrillation. I would be highly suspicious of that.
Patrik: I’m sure they’ve done something, but there are no ICU nurses in TOPCARE. There are no ICU doctors in TOPCARE. There may be one doctor for 30 patients or whatever the case may be. Yes. I’m sure they treat it. But in what timeframe? Number one. And at what cost to the recovery of your mother?
Lorietta: Well, she is so precious and she now has an infection and they just started the antibiotic today. Possibly urinary tract infection. We’re waiting to pull the chart.
Patrik: So, take all of that aside. Yes, she’s in TOPCARE now, so we’ve got to deal with that. We we could potentially get her back into ICU, but it probably would take, would need to take some level of deterioration, which we don’t want.
Patrik: The only way often for people to go back into intensive care is if there’s some level of deterioration, which we of course don’t want. A TOPCARE, supposedly, is designed to wean people off the ventilator. Yes, they’ve tried and they didn’t succeed. But, just because you don’t succeed for the first time doesn’t mean you should give up. It’s like with anything in life. You’re not giving up at the first attempt just because you don’t
succeed.
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Lorietta: Makes sense. Yes.
Patrik: And where is the advocacy for your mom if she needs more time? Now they’re putting basically the gun to your head and say, “well she needs to go somewhere else because her time is up.” Where’s the advocacy?
Lorietta: Not much. There was a case manager but it’s just like a long term nursing home type or go home. I’m trying to see how we can get things in place if we go home. We need a generator and a checklist. We need a nurse, a private nurse there.
Patrik: Yeah. I’ll come to that. I’ll come to that. So what are your roadblocks at the moment?
Lorietta: The moment, she had a pressure ulcer last year and so she used all of her rehab days the last year. So even if we go to a ventilator facility, I guess it’s just short term. That’s a block. You have to be on Medicaid, which is for people who are financially underprivileged for her to go long term. I don’t know if we’re eligible for that. Although we are financially underprivileged, but maybe not to that extent.
Lorietta: And making sure we have caregivers in place. She has 11 around the clock. That’s expensive. And just making sure we’re familiar with how to clean a tracheostomy, how to suction, and if her monitor goes off, how to respond appropriately.
Patrik: What does your ideal scenario look like? If you had a magic wand, what would your ideal scenario look like?
Lorietta: It would have been going to Atlanta, Georgia to a centre called the Caring hands centre where they help people with traumatic brain injuries, they have housing for the family.
Lorietta: And it’s something like that. Even if she just stayed at Caring hands centre for one month, just to have some really professional, the best of the best care.
Patrik: Absolutely. And what stops you from getting there? Is it location, is it insurance?
Lorietta: Well, they told us because she’s not conscious, they have a rigorous programme. And so you have to be conscious.
Patrik: Have you spoken to them directly or do you hear these second-hand?
Lorietta: I’ve spoken with them directly. I reached out to them by email and by phone.
Patrik: All right. If you’ve spoken to them, I’m a big believer that everything in life is negotiable. I’m a big believer in that. And again, if you’ve spoken to them once, maybe if they’ve told you, “yeah. It’s not an option,” I don’t know. Maybe you need to talk to them twice. I don’t know.
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Lorietta: I’m willing to try anything.
Patrik: Like with anything that’s worthwhile to achieve in life from my perspective, usually it doesn’t happen in the first attempt. And the health system is highly bureaucratic. The health system is used to shutting people down if they try something. But persistency is, I believe, persistency and insider knowledge is usually what gets people across the line.
Lorietta: And another block, there is a facility in Memphis, Tennessee and we live in Tennessee but it’s like three hours away. It’s in a really country area. I live in another state, but I’ve been here for a month helping my mom and I’m also an elderly grandmother. I’ll be here for another month and it’s just not, I can’t be there.
Lorietta: When I go back to the state where I’m living, it just won’t be realistic. The logistics and everything. It’s a bigger city and I could get there, a big airport and all that. No big deal.
Patrik: Yeah. No, I understand. I’m sure there are elements that are beyond your control. I’m sure there are, but it’s always good to focus on the things that are within your control and that it’s usually the way you can achieve the most if you keep focusing on the things that you control.
Patrik: So here’s what I can see from what you’ve described so far, you’ve been given the options of potentially going home, but it sounds to me like the burden would be on you to provide the care. That’s number one. That’s what it sounds to me like.
Patrik: Number two, you’ve been given the option of a nursing home, which if you’ve seen the level of care provided in TOPCARE would be even worse. Right?
Lorietta: Yes.
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Patrik: Then the next question to me is, can she get off the ventilator? Well, I don’t know that, but given that she came close last week, well that’s a good sign… Right?
Lorietta: She did as she went to distress and she was just exhausted. By night, overnight just struggling.
Patrik: So, that then the question is, yeah, that happens, right. That happens. But, try it again.
Lorietta: Try again. Okay.
Patrik: Just to give you some insights where I sit with all of this, I’ve worked in intensive care for nearly 20 years. I’m an intensive care nurse by background. I also now own and operate a company, intensive care at home, where we look after ventilated patients at home.
The 1:1 consulting session will continue in next week’s episode.
