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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 one of my clients and the question in the last episode was
You can check out last week’s episode by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED“, I want to continue answering the next questions regarding James’ and Christine’s Dad in ICU who’s had a haemorrhagic stroke.
James’ and Christine’s Dad had a brain decompression where they evacuated a large bleed from his brain after the haemorrhagic stroke.
James’ and his sister Christine were getting their Dad in one of the best hospitals in the USA, the Cleveland clinic in Ohio.
In the meantime, their Dad was getting a tracheostomy because he couldn’t be weaned off the ventilator and the breathing tube.
He also had ongoing seizures due to the stroke and his anti-seizure medications needed to be optimized so he could “wake up” and progress to Neurology Rehabilitation.
In today’s episode of “YOUR QUESTIONS ANSWERED”, I’m talking to James’ sister Christine who also has questions regarding her Dad’s situation, especially with a view of the Cleveland clinic wanting to move her Dad to an LTAC (long-term acute care) facility.
Christine wants to know what’s the best course of action.
Today’s consulting and advocacy session is another excerpt from a 1:1 phone and email consulting and advocacy session with me and the topic this week as part of this series of 1:1 consulting and advocacy session with me and my clients James and Christine is
Why you should avoid LTAC or subacute care when your loved one is critically ill in Intensive Care and ventilated!
James and his sister Christine contacted me last year in August and him and his family were facing a massive challenge. Their Dad in his early 70s had a haemorrhagic stroke and he therefore had a massive bleed in his brain.
When James and Christine first contacted me his Dad had already spent a few weeks in ICU and already had a tracheostomy because he needed long-term ventilation in ICU.
Furthermore, James’ and Christine’s Dad wasn’t “waking up” due to the increased seizure medication he was getting, as part of his condition was that he had frequent seizures to begin with.
To make matters worse, besides the stroke, the seizure activity and the long-term ventilation, the ICU was adamant to send his Dad out of ICU into LTAC (long-term acute care). If you have followed my consulting and advocacy for any length of time you would know that I strictly advice against LTAC or subacute care.
I can’t tell you how many people contact us in desperation when they have a loved one in LTAC and want to get them back into ICU. LTAC’s are disaster at the best of times.
Cutting to the chase, in this series of 1:1 consulting and advocacy sessions with my client James, I can show him how to keep his Dad in ICU against the hospital’s wishes and I can show James and Christine how they can negotiate best care and treatment for his Dad, including getting him off the ventilator and the tracheostomy as well as managing the seizures!
Enjoy today’s consulting and advocacy session and use it to your advantage!
Patrik: Intensive care hotline. Patrik speaking. How can I help?
Christine: Yes. Hi Patrick. This is Christine, James sister, regarding my dad Peter.
Patrik: Hi Christine, how are you?
Christine: I’ve been reading the emails and everything. My brother wanted me to give you a call. Um, just so are you an ICU nurse that consults families in Intensive Care, who’s also advocating?
Patrik: Yes, I’m an ICU nurse with nearly 20 years’ experience.
Christine: Ok. I guess my only concern is, you know, this whole thing is extremely traumatic. What is your expectation of what could happen here too? My dad is at… the simple thought, the thought that he seems to be understanding now and not following a ton of commands, but he does seem to understand what we’re saying. Is there hope here? Is this a process? What could we expect from this whole thing as we go along with this?
Patrik: As I mentioned to your brother James, I can pretty much answer any questions about intensive care.
The reality is that no intensive care doctor or Intensive Care nurse has any understanding really what’s happening to patients once they leave Intensive Care. It’s the big unknown! Right? And that’s also where, you know, my expertise stops in all honesty, you know, so I can answer you all questions as it relates to what happens in Intensive Care or in INTENSIVE CARE AT HOME, I think from what we’ve been talking about over the last couple of weeks with James, your Dad is definitely making progress.
Christine: Right, OK.
Patrik: Your Dad is seizure free for now, he’s coming off the ventilator I belief, you know, at least intermittently in the next few days. That’s all, that’s all promising for now. I mean it’s, it’s been four weeks now since he’s been first admitted?
Christine: Right.
Patrik: So yeah, that, you know, you look at that timeline four weeks, it sort of didn’t happen fast, but there’s definitely progress. The reality is that because off the head and brain injuries, that recovery is extremely slow and, and you know, and getting him to that point where he can be weaned off the ventilator and then get out of ICU, that’s a very promising ride!
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Christine: That’s what I believe too.
Patrik: If you can keep him out of LTAC (long-term acute care facility), that I believe would be beneficial for him because the focus in the future needs to be on his neurological rehabilitation and not on weaning him off the ventilator and the tracheostomy. Any ICU is much better equipped to wean a patient off the ventilator then and any LTAC’s are.
Christine: I went to an LTAC last night and I just was not in impressed.
Patrik: John was telling me about, about that you visited LTAC (long term acute care) and um, yeah he says that you are very concerned too to get your Dad to LTAC (long term acute care). So you know, James has been sending me daily updates and pictures of your Dad’s ventilator. I believe on Wednesday or on Thursday and obviously now he’s given me another update and I believe he’s made rapid progress. They are going from a lot of support to minimal support on the ventilator. Promising. I mean you might have seen the emails that we sent the last couple of hours on everything.
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Christine: I just wanted to touch base. Yes. Now that neuro rehab, I know your ICU, you know I’ve been searching online for the best places in the US for neuro rehab. Have you heard of anything by chance? Do you know any good neurology rehabilitation places?
Patrik: No, I don’t I’m afraid. Again, that’s not, that’s not my area of expertise. I also believe it’s too early to look at Neuro rehabilitation given that your Dad is still in ICU.
He needs to get off the ventilator first and have the seizures controlled.
You know, imagine, imagine your dad is going to LTAC where the focus is mainly on weaning off the ventilator. Then the neuro rehab is almost like a secondary ride. Whereas if he’s off ventilation, wouldn’t that be a big step and then they can focus on the neuro rehab that, that would be my clear recommendation. That would be my thinking about the next steps.
Christine: Ok, well I just wanted to touch base with you. Thanks for everything. Thanks for guiding us. Now I look at the emails. We appreciate everything. It’s, it’s been very hard and we needed this backup so, so. Ok. All right. Well thank you so much.
Patrik: You’re very welcome, and try and stay positive. I know that’s easier said than done, but try, try and stay positive. I do believe even if the outcome is not what you want, staying positive is still better than staying negative!
Christine: Right? Right. Yup. Yup. We are, we’re staying very positive and we keep going. So, and we know it’s a process. So, um, you know, the thing about the ventilator though, uh, in your opinion, how long does it take to wean off the ventilator and the tracheostomy before he can go to neuro rehab?
Patrik: James was asking the same when we spoke this morning your time. And look, your dad might be off the ventilator within a week, right? I mean he’s only minimal support now, but the thing in ICU is, you might have to brace yourself- even though he might be off the ventilator in a week- you know, sometimes in ICU it’s two steps forward, one step back, right? In the ideal world, he’d be off the ventilator in the next week or even sooner, but that could also be setbacks.
Christine: Right.
Patrik: I really do like that they are mobilizing him and I think they need to continue that every single day. That helps to build up his strength.
Christine: You mean like putting him in the chair?
Patrik: Yeah. Putting the job to build up his strength, that’s going to be very important on an ongoing basis. But recovering in ICU is often two steps forward and one step back. Right. So, um, you know, there are, and you know, the worst-case scenario simply is your dad will never come off the ventilator, you know, that’s the worst case scenario. I don’t think that’s happening, but you know it could happen as well. But the reality is we don’t have a crystal ball.
Christine: Well this is what I’m wondering, you know, they’re kind of, they’re kind of pushing us to that LTAC (Long-term acute care) facility and today I said no!
Patrik: Good!
Christine: But if we can get him off the ventilator and then they say, “ok, he’s off the ventilator”, I guess then they could put my Dad on another floor in the hospital here and monitor him while he’s off the ventilator. That would probably be the best thing rather then them taking him right out of Cleveland clinic and he has no ventilator. And what if he has a relapse, you know, I’m concerned of that of course.
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Patrik: But, but the, the, the chances of a relapse are reduced once he’s off the ventilator.
Christine: Ok, really?
Patrik: So ventilation is life support. Ok?
Christine: If we can get my Dad off the ventilator and even though I don’t have the expertise, if I get him off the ventilator in a week and now they say “ok well we don’t need you in ICU any longer”. And they transferred him to a rehab, I’m worried we haven’t had enough time off the ventilator where he can successfully breathe on his own. Could he go backwards and we have no monitoring of that?
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Patrik: Of course, if he does come off the ventilator and the next week, you know, they would still need to give him some time. Then it also depends. How quick is a bed made available in a rehab facility? Where is the facility? Is it a facility that you know, you support? Would you want to have a look at other options first? So it, it, I don’t think it’s a matter of your dad coming off the ventilator and then within a couple of days then move him on.
Christine: Right.
Patrik: That, that might happen. That might happen, but I don’t think it will happen that quickly.
Christine: It might be another week?
Patrik: The more time…the more time you can buy for him in the hospital, the better it is at this stage.
Cristine: That’s very significant. So even though he’s in Intensive Care, we get him off the ventilator, it would still be better for him to go to another floor in the hospital then go to an LTAC?
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Patrik: I would try and avoid LTAC at any cost especially, you know, given that you’ve had a look at this facility and you didn’t have a good impression. I’m sure there must be other LTAC’s as well in Cleveland, but you know, obviously they’ve only, they’ve only given you one option at this point, but there must be other LTAC’s as well.
Christine: I don’t know. But for Cleveland clinic, this is like the number two hospital in our country. I would say my dad is much better off here.
Patrik: Absolutely, but for now, but for now I think, you know, especially since he’s making progress coming off the ventilator, it’s sort of, you know, almost like bargaining power, if you will. You know, well he’s coming close to coming off the ventilator, can’t we keep him for another week at Cleveland clinic, you know, and see if he’s coming off the ventilator and once he is off the ventilator, um, can we go on another floor and then onto rehab and avoid LTAC.
And you know, you see insurance, for example, LTAC is probably way more expensive for the insurance in the long run than it is to wait another week or two in hospital and then getting on to neuro rehab.
I would imagine that’s more cost effective for the health fund too. So you could argue on that level even if the health fund is trying to make things difficult.
Chrstine: Ok, that makes sense. Ok, good. All right. Ok, Well thank you Patrik.
Patrik: You’re very welcome. Have a good night.
Christine: You too, you too!
Watch out for the next consulting session with James in the next episode of “YOUR QUESTIONS ANSWERED”
See you then!
Your friend,
Patrik
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 to stop being intimidated by the Intensive Care team and how you will be seen as equals
- You’ll get crucial ‘behind the scenes’ insight so that you know and understand what is really happening in Intensive Care
- 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!
Make sure you also check out our “blog” section for more tips and strategies or send me an email to [email protected] with your questions!
Also, have a look at our membership site INTENSIVECARESUPPORT.ORG for families of critically ill Patients in Intensive Care here.
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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