Hi, it's Patrik Hutzel from INTENSIVECAREHOTLINE.COM , where we instantly improve the lives of Families of critically ill Patients in Intensive Care, so that you can 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!
In last week's BLOG I've shown you "How to REPROGRAM YOUR MIND if your loved one is critically ill in Intensive Care!"
You can check out last week's blog here!
In this week's BLOG I want to take you once again "BEHIND THE SCENES" in Intensive Care as it continues to be critically important that if you have a Family member critically ill in Intensive Care that you know and understand what's happening BEHIND THE SCENES in Intensive Care!
Therefore, this week's topic is
5 things NOBODY HAS EVER TOLD YOU about Intensive Care!
So, there you are. Your loved one has just been admitted to Intensive Care. You are in shock.
You haven't seen it coming. And worst of
all, you haven't been expecting to be that far outside of your comfort zone.
You don't know what to expect. You will have found by now that the Intensive Care team might be unavailable for you and your Family. If they are available, they implicitly or explicitly have told you that they are the one in charge and that they are the ones making the decisions.
One way or another, you are supposed to know what's happening with your critically ill loved one. After all the Intensive Care team has told you everything you need to know.
Or so you think.
Or maybe you've already got the feeling that the Intensive Care team is playing their cards close to their chest and they all speak in medical terms and in their medical jargon, just to make sure that you are buying into the perceived power and the perceived authority the Intensive Care team supposedly has.
On top of that you also know by now that feeling outside of your comfort zone, that feeling stressed, feeling frustrated, feeling overwhelmed and feeling vulnerable is not fun.
You need to QUICKLY get a handle on things!
Thankfully you started to look out for help and things will only get better from now on, as you are on
the right path to PEACE OF MIND, control, power and influence, irrespective of the situation that you are finding yourself in, whilst your loved one is critically ill in Intensive Care.
If you have come to this place then it's very likely that your critically ill loved one is not a "straightforward" admission
to Intensive Care. If you have come to this place, seeking out help and seeking information and doing your own research then it's very likely that your critically ill loved one is
- very unstable and in a very critical condition
- in a life threatening situation
- in Intensive Care for long-term treatments and long-term stays
- having a severe(traumatic) head or brain injury
- threatened with an "NFR"(Not for resuscitation) or "DNR"(Do not resuscitate)
order
- approaching their end of life in Intensive Care
and if any of these rings true for you then you need to very quickly get a handle on things, because if you don't the fact of the matter is that you will belong to the 99% of Families of critically ill Patients in Intensive Care who have no PEACE OF MIND, no control, no power and no influence.
You see after more than 15 years Intensive Care nursing experience in three different countries and after I have worked with literally thousands of critically ill Patients and their Families I have also found that there are a lot of things that doctors and nurses in Intensive Care take for granted.
There are a lot of "unwritten" and "unspoken" rules in Intensive Care!
Doctors and nurses in Intensive Care take for granted that there are a lot of "unwritten" and "unspoken" rules for example. You as a family member don't even know what that means and you generally speaking are therefore kept at "arm's length" so to speak. You don't even know that it's happening. Or maybe you do, after you've had a few
encounters with the Intensive Care team.
In any case, in order for you and your Family to get a grip and a handle to what I'm referring to and more importantly in order for your to have PEACE OF MIND, control, power and influence you need to know the
"5 things NOBODY HAS EVER TOLD YOU about Intensive Care!"
1) Intensive Care is a "HIGH STAKES" game and generally only the Intensive Care team
knows how to win
As you probably know by now, the Intensive Care team are like "fish in water" and you and your Family
are like "fish out of water". It also means that the Intensive Care team is "in their comfort zone" and you and your Family are way outside your comfort zone.
The Intensive Care team is used to getting what they want. After all they
have the perceived power and they are the perceived authority.
That positioning makes it relatively easy for the Intensive Care team to play this "HIGH STAKES" game and win.
Given that Intensive Care is such a "HIGH STAKES" game, it's time for you to rally up and get your positioning right. The fact of the matter is that if you don't start asking the right questions, if you don't look BEHIND THE SCENES and if you continue to take everything for FACE
VALUE the Intensive Care team is telling you, you'd be fighting an uphill battle and PEACE OF MIND, control, power and influence remain a distant and far away land for you and your Family!
2) What's happening "BEHIND THE SCENES" in Intensive Care may ultimately DETERMINE your critically ill loved one's FATE and DESTINY if you don't do your own research
Remember, you and your Family are in a "ONCE IN A LIFETIME" situation and you can't really afford getting things wrong.
What's happening in Intensive Care BEHIND THE SCENES may ultimately determine your critically ill loved one's FATE and DESTINY if you are not prepared to
look BEHIND THE SCENES in Intensive Care.
The power play, the politics, the dynamics, the psychology, the competing interests, the intrigue and most of all the hidden agendas of the Intensive Care team may ultimately decide your critically ill loved one's FATE and DESTINY!
Medical research interests, bed availability, bed pressures, financial pressures, staff availability and many more competing interests often impact on the positioning of the Intensive Care team.
It therefore impacts on the positioning of your critically ill loved one's diagnosis and prognosis by the Intensive Care team.
It also impacts on the care and treatment offered or not offered for your critically ill loved one by the Intensive Care team!
3) The Intensive Care team always has an agenda and they will never tell you about the moving parts and the hidden agendas. It's up to you to do your own research
Do you know some of the shows on TV like "Emergency room" and other similar hospital shows. They
are full of crap and there is nothing in those shows that offers even a glimpse of what reality looks like in an emergency department or in Intensive Care.
Look, if your critically ill loved one is in one of those situations where they are
- very unstable and in a very critical condition
- in a life threatening situation
- in Intensive Care for long-term treatments and long-term
stays
- having a severe(traumatic) head or brain injury
- threatened with an "NFR"(Not for resuscitation) or "DNR"(Do not resuscitate) order
- approaching their end of life in Intensive Care
the stakes are extremely high and you simply need to know what to do in order to have PEACE OF MIND, control, power and influence!
If your critically ill loved one is in one of those challenging, difficult and often heartbreaking situations, the Intensive Care team will weigh up their options and they will once again keep their cards very close to their chest.
Weighing up their options means that they are looking at the overall situation in the Intensive Care Unit, they will look at resources available and they will closely look whether you have an understanding of the situation. If you don't then they can easily drive their agenda and
it'll be easy for the Intensive Care team to "sell" you on a "withdrawal of treatment" as being "in the best
interest" for your critically ill loved one, if they think they need the ICU bed for another admission where they can make more money, do medical research etc...
4) Medical research is a revenue generating tool, as well as a positioning tool for Intensive Care Units. The sicker Patients are the higher the likelihood that your critically ill loved one is enrolled in a medical research study without consent from you or
from your loved one
Most information on the Internet available about Intensive Care is from doctors for doctors in form of a medical research paper.
This is one of the reasons I came up with the idea of starting a website for Families of critically ill Patients in Intensive Care.
Families of critically ill Patients in Intensive Care don't need a medical research paper. They need factual information from the ground that's written or spoken in a language that they understand.
Families of critically ill Patients in Intensive Care don't need academic talk that they can't understand. They need everyday language so that they can understand what's really happening in Intensive Care. No hiding behind medical jargon and medical language.
Oh, and by the way, yes there is a high likelihood that the sicker your critically ill loved one is that they are enrolled in a medical research study without you or your family even knowing, let alone you or your loved one giving consent.
Being enrolled in a medical research study could mean that your critically ill loved one is receiving or not receiving certain drugs or it could mean that your critically ill loved one is receiving surgery or not receiving surgery for certain types of conditions. The outcome is up in the air and that's what medical research is all about...
5) Having PEACE OF MIND, control, power and influence is entirely up to you and the time to STOP MAKING EXCUSES why you can't have
PEACE OF MIND, control, power and influence is now
I keep repeating myself here, however it's critically important for you to know that 99% of Families of critically ill Patients in Intensive Care have no PEACE OF MIND, have no control, have no power and have no influence, period!
Those 99% of Families of critically ill Patients in Intensive Care tend to be so overwhelmed by what's
happening all around them that they just don't even think that PEACE OF MIND, control, power and influence is within their reach.
Those 99% of Families of critically ill Patients in Intensive Care also tend to be the master at making excuses why they can't have PEACE OF MIND, control, power and influence!
You certainly don't want to belong to those 99% of Families of critically ill Patients in Intensive Care who have no PEACE OF MIND, have no control, have no power and have no influence.
You certainly don't want to belong to those 99% of Families of critically ill Patients who will stay at the mercy of the Intensive Care team when it comes to the well being of your critically ill loved one.
You certainly don't want to be at the mercy of the Intensive Care team when it comes to your sanity and well- being in this ONCE IN A LIFETIME, challenging and difficult situation.
Making excuses is easy, it's the easy way out, it's not taking
responsibility for whatever challenge you are facing and it's often what happens when the going gets tough.
And that's not for you and you know that already.
What's the alternative?
You guessed it.
The alternative is to take full responsibility for the outcome that you get in any situation in life, even when it comes to such a difficult, challenging and ONCE IN A LIFETIME situation such as having a loved one critically ill in Intensive Care.
Also, check out our "YOUR QUESTIONS ANSWERED" section
where I answer all of YOUR questions
http://intensivecarehotline.com/category/questions/
Hi, it's Patrik Hutzel from INTENSIVECAREHOTLINE.COM , where we INSTANTLY improve the lives of Families of critically ill Patients
in Intensive Care, so that you can 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 our readers and the question last week was
"My husband had a horrible work accident and went into cardiac arrest. Will he be permanently
disabled?"
You can check out last week's question here.
In this week's episode of "YOUR QUESTIONS ANSWERED" I want to answer another question from one of our readers and this week Ellie, who has been featured with some of her previous questions here, Ellie PART 1, PART 2 and PART 3 about
My Mum has been in ICU for three weeks now and she is on ECMO for ARDS! Will she SURVIVE?(PART 4)
Ellie has also been featured in our PODCAST in an interview that you can check out here.
Since Ellie's mother is progressing and on her way to recovery, Ellie's next
question focuses on the removal of her mother's Tracheostomy!
Hi Patrik,
feeling a bit stuck
again!
They keep putting off the removal of the tracheostomy and I feel she is becoming more and
more delirious. Is it normal to get out if delirium them go back into it? I'm trying to stimulate her and her long term memory is fine but she talks such gibberish and when u ask her to repeat it she says I don't know what I said .
The reason they're not taking the tracheostomy out is they say her cough is not strong enough but she is coughing up phlegm fine herself .
The last doctor who finished on last Saturday said she was definitely ready . Then he didn't take it out abc the
new doctor (they change each week- 7 days) hasn't taken it out and is very elusive and I can't get to speak with him.
I'm so desperate for her to get into a more normal routine - eating and drinking .
Rehab wise it's going ok , out most days for 1 hour . I know she needs to do longer, hoping it will get easier to do longer like you mentioned over the next week
. Legs and arms seem stronger when pushing against me . The Physio girls wheeled her outside to see her grandson which was great but only did 10 mins as they were worried something could go wrong . She was ok but not holding head up as well as normal by bed.
Any ideas on how to get them to
remove tracheostomy this week will be appreciated. I want to really push somehow .
I have one other question if you don't mind!
My mum is really sleepy all the time. One of the nurses said thats a good thing. Do you think thats good and is it normal? I try to do extra exercises with her like Ive been shown by the physio but again, she was more awake and alert in the first
week and now seems to be getting more tired. They are also giving her sleeping pills now and again (5 times so far) called Zopiclone (or something like that). I Will check your website now for articles!
Ellie
Hi Ellie,
I'm sorry to hear that things are not progressing as quick as you wish them to move!
I have just looked through my emails and you first emailed me on the 15th June and by then your mother was in ICU for three weeks, so I assume first ICU admission
was around 20 -25 th May.
Therefore, your mother has now reached the two month mark in Intensive Care!
That's a very long time by any account and I can totally see why you and your mother are getting frustrated!
After your last email I would have assumed that by now the Tracheostomy would be out!
Let's quickly establish the facts:
- Your mother has been off the ventilator for at least a week
- She has been having the speaking valve regularly and is able to speak
- She is able to cough up her phlegm
- She has had one failed attempt to remove the Tracheostomy around two weeks ago
- They are sitting your mother out of bed around one hour per day
- The Intensive Care team claims her cough isn't strong enough
- You didn't mention that your mother needs regular suction(if she does, that might stop the Tracheostomy removal)
- Your mother is more sleepy
- They are giving her more sleeping pills
- The doctors are unavailable to talk to you
As I have outlined in a previous email, please be clear to the Intensive Care team about those guidelines for Tracheostomy removal
1) Chest x-ray> is the chest x-ray showing secretions sitting on her
chest or would she still have some partial collapse of her lungs and therefore at risk for Pneumonia?
2) ABG's> which stands for arterial blood gas> it's basically a blood test that's showing how well she's breathing with her oxygen and carbon dioxide levels being checked
3) Speech pathology
test> mainly for neurological Patients after stroke and other brain injuries to make sure Patients can swallow properly so that they don't aspirate(= getting stomach content into the lungs) and in your mother's case it might
be advisable to test speech and swallowing function as well before Tracheostomy removal as she had it for a long time
4) also, before removal of the Tracheostomy your mother should be at least off the ventilator for a good 3-4 days
Ok, here are a number of other things that I think come into the overall situation
1) One hour per day sitting out of
bed is not enough! Even though your mother has been in ICU for more than two months now and is very weak, there is absolutely no reason why she can't be out of bed for longer than one hour per day! If she gets tired quickly, she can sleep in the chair, but sitting up is just SO IMPORTANT for your mother's chest!
2) Your mother should not be delirious at all. All the heavy sedatives she had a few weeks back should have worn off by now and she should be wide awake. Having said that long term Intensive Care Patients often have a disturbed day and night rhythm and that may be part of the delirium. And it could well be that your mother is getting sleeping tablets because she may not be sleeping at night. The side effects can be that she will then be tired during the day and gets delirious.
What I think needs to happen from what you describe though is that your mother needs to get into a regular day and night routine so that she is awake during the day and therefore can sleep at night.
I can't stress this enough Ellie that one hour sitting out of bed is just RIDICOULOUS!
Your mother needs to get out of bed by 9 am at the latest, have a few hours rest at lunchtime and then get out of bed again in the afternoon!
Ellie before is started doing this, I was a Nurse Manager in Intensive Care for 5 years and I can tell you that if a long-term Patient had been out of bed for one hour per day I would have asked my staff what else they were doing with this Patient. Are the staff sitting around all day or
what?
Your mother won't get strong in bed and her breathing and coughing muscles won't get strong when lying in bed all day!
By your mother having daily and regular stimuli she will be tired at night and sleep and they need to start doing that ASAP!
Unless there is any particular reason that your mother can't get out of bed
because of a weak heart(something you never mentioned) it's just a matter of doing it and sticking to it!
The other dilemma with long term ICU Patients often is that the Intensive Care team gets frustrated as well and they are therefore not giving your mother the attention she really needs.
What's also extremely important is that your mother gets good nursing care.
That is nothing less than
- Having regular washes and showers, hair washes(there is absolutely no reason your mother can't have a shower in ICU at least twice a
week! Regular showers are doing wonders for ICU Patients!
- Having good and regular mouthcare!
- Having regular and experienced nursing staff looking after her. Often the more experienced staff look after more acute and short term Patients, rather than long-term Patients
- Don't put up with your mother having junior and inexperienced staff looking after
her
- Don't put up with a different nurse everyday, your mother needs consistency
- Urgently demand a meeting with the ICU consultant and get the facts. By now you know that they are changing every 7 days, so try and grab them early in the week and demand answers!
- Check out this article here and start becoming "difficult and demanding"
The 5 reasons why you need to be DIFFICULT and DEMANDING when your loved one is critically ill in Intensive Care
To sum things up from what I can see, your mother needs to get more active during the day and sleep at night.
There should be no delirium whatsoever. I would strongly argue that reducing sleeping pills and stuff and getting more active is the answer to getting the Tracheostomy removed, everything else is BS.
What are the nursing staff doing all day if she can't get mobilised? Are they the ones taking the sleeping
pills? How will your mother get back on her feet again if they are not putting in the effort?
Also ask them whether they've given her some Haloperidol(Serenace). It's a terrible drug and often given for delirium and from my experience it can make things worse!
Again, you have come a long way and your mother
will be getting there and now you need to stay strong for the rest of the Intensive Care journey!
I hope that helps Ellie.
Take care
Patrik
If you want your questions answered just hit reply to this email or email me at support@intensivecarehotline.com and I'll answer your questions!
Also, our cutting
edge new information PRODUCT will be released soon! We are NOW finalizing our first cutting edge information PRODUCT that will help Families of critically ill Patients MASTER, take control, have power and influence in all of the most challenging situations in Intensive Care, even if their loved one is dying!
The information product will be an "IN-DEPTH" education product for Families of critically ill Patients in Intensive Care and a SHORTCUT for Families to
have PEACE OF MIND, control, power& influence! The focus of the education product will be on PEACE OF MIND, control, power and influence during the following situations in Intensive Care
- long-term stays in Intensive Care
- end- of- life situations
- Family meetings with the Intensive Care team
- withdrawal of treatment situations and/or perceived medical futility
- what to do
if your critically ill loved one is threatened with an "NFR"(Not for resuscitation) or "DNR"(Do not resuscitate) order
- severe head and brain injuries
The information product will be made available in Ebook, Video and Audio format so that our Customers can consume the information product in their chosen medium!
Keep your eyes on news and updates for our cutting edge new information PRODUCT!
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If you have any questions about our upcoming products or if you have any suggestions
please let me know at support@intensivecarehotline.com
Your Friend
Patrik Hutzel
Critical Care Nurse
Founder& Editor
WWW.INTENSIVECAREHOTLINE.COM
