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 be AWARE and PRESENT in Family meetings with the Intensive Care team"

You can check out last week's BLOG here!

In this week's BLOG I want to teach you why it's so important that you 

DISRUPT before you are being DISRUPTED, whilst your loved one is critically ill in Intensive Care!

If your loved one has been admitted to Intensive Care for critical illness, your worst nightmares have become a reality!

The fear of the unknown, the fear of the future, if there is any for your critically ill loved one, is real and tangible!

You are way outside of your comfort zone and your levels of frustration, stress, anxiety, overwhelm have skyrocketed!

Worst of all the vulnerability you are currently feeling is real and tangible and is literally right in front of you and there appears to be no escape!

DISRUPTION stands for confusion and disorder

Your, your Family's and your critically ill loved one's lives have certainly been DISRUPTED!

The definition for "DISRUPT" in the free dictionary stands for "To throw into confusion or disorder".

After I have worked in Intensive Care nursing for more than 15 years in three different countries and after I have looked after literally THOUSANDS of critically ill Patients and their Families, I have seen over and over again that 99% of Families of critically ill Patients in Intensive Care have no PEACE OF MIND, they have no power, no control and no influence!

Because Families of critically ill Patients are so far outside of their comfort zone and they are not prepared when "shit hits the fan".

And why would you prepare yourself for something that may or may not happen?

But given that you are here and given that reality has struck you and your Family in one of the most unpleasant ways there can ever be, you are certainly looking for answers!

Now, given that you, your Family and your critically ill loved one are in a situation where your lives have been DISRUPTED, lets quickly look at the other side of the coin and lets look at the Intensive Care team.

The Intensive Care team doesn't feel DISRUPTED

The Intensive Care team doesn't feel DISRUPTED, because they see critically ill Patients and their Families day in and day out!

New Patients are coming in every single day in a busy Intensive Care Unit!

Intensive Care is a busy, dynamic and volatile environment!

Critically ill Patients live and they die or they stay in ICU for long periods of time. In any case, Intensive Care is a busy, dynamic and volatile environment and if the Intensive Care team felt DISRUPTED every single time they are dealing with a new major crisis they wouldn't be in a position to run such a place!

The Intensive Care team therefore has scripted their plot and agenda well in advance before it was even remotely on your radar that one of your Family members might be admitted to Intensive Care one day.

Therefore the Intensive Care team doesn't feel DISRUPTED by whatever drama is coming through their door.

They know they have the upper hand and they know that you and your Family, generally speaking have no PEACE OF MIND, no control, no power and no influence!

The Intensive Care team therefore is in a position of "perceived power" and "perceived authority"!

They've been granted that "perceived power" and "perceived authority" over many decades if not centuries where society has wrongly made people believe to trust doctors blindly.

And you can see, hear and feel in every interaction with you and your Family that the Intensive Care team speaks over you and at you rather than entering into a genuine dialogue.

You and your Family can see, hear and feel in every interaction that the Intensive Care team doesn't really have the inclination to answer the many questions you have!

After all the people within the Intensive Care team are all very accomplished, smart, highly intelligent and academic people that shouldn't be questioned and they shouldn't be robbed of their precious time...

Families of critically ill Patients have their lives being DISRUPTED and they don't take a stand! 

Therefore, the 99% of Families of critically ill Patients in Intensive Care who have no PEACE OF MIND, no control, no power and no influence retreat back into their place, they are not taking a stand and they passively let their lives being DISRUPTED by a major and unpleasant force and they are passively hoping for things to get better!

Hope is not a strategy however!

If your loved one is critically ill in Intensive Care and 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

do you really feel that hope should be your strategy?

Given that Intensive Care is the Industry that it is nowadays, with Millions of Dollars $$$ exchanging hands every single day, with Patients competing for scarce Intensive Care beds, with Intensive Care teams and Hospitals competing for funding and with Intensive Care teams competing for medical research grants and with Intensive Care teams knowing what they say and how they are going to say it to Families of critically ill Patients, hope can never be your strategy!

Your strategy needs to be something more solid than just HOPE!

If HOPE is your strategy, you and your Family are doomed!

And don't get me wrong here, I'm the first one to advocate for positive thinking and I even wrote a blog about it(click on the link)

How to stay positive if your loved one is critically ill in Intensive Care!

However that can only ever be a by-product of another strategy that focuses on you and your Family having PEACE OF MIND, control, power and influence even in the most challenging of situations there are in Intensive Care, where 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

Now, if you and your Family have found yourself in any of those situations, you also know by now that the Intensive Care team holds all the decision making power, they hold all the power about how they position your critically ill loved one's diagnosis and prognosis and they hold all the power about the care and the treatment they are offering or not offering your critically ill loved one.

That's how the Intensive Care team rolls, because 99% of Families of critically ill Patients in Intensive Care who have no PEACE OF MIND, who have no control, no power and no influence don't question, they don't look at what's happening "BEHIND THE SCENES" in Intensive Care and they just simply don't believe that they can have PEACE OF MIND, control, power and influence!

You need to do some things that at first might feel COUNTER-INTUITIVE

Therefore, in order for you and your Family to have PEACE OF MIND, control, power and influence, you need to do some things that at first might feel COUNTER- INTUITIVE!

However if you don't take those COUNTER-INTUITIVE steps you and your Family will continue to feel DISRUPTED and you and your Family will continue to have no PEACE OF MIND, no control, no power and no influence!

If you and your Family don't look at

• what's happening "BEHIND THE SCENES" in Intensive Care

• if you and your Family don't realize that you can't really afford getting this "ONCE IN A LIFETIME" situation wrong

• if you and your Family continue to take everything for "FACE VALUE" the Intensive Care team is telling you

• if you and your Family don't understand that the politics, the dynamics, the power play, the medical research interests, the intrigue, the psychology, the competing interests and the hidden agenda of the Intensive Care team are all part of why the Intensive Care team positions your critically ill loved one's diagnosis and prognosis the way they have done

• if you and your Family don't understand that the financial interests $$$ the Intensive Care team has, have a huge impact on how the Intensive Care team positions your critically ill loved one's diagnosis and prognosis

then you and your family continue to feel DISRUPTED!

So what's the solution to the dilemma?

The solution to the dilemma is to DISRUPT!

And by that I mean that you and your Family need to quickly bring yourself in a position where you have solid and proven strategies that will help you to pro-actively manage the Intensive Care team!

Your solution to the dilemma is to start acting and behaving differently compared 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 can trust me that the minute

• you start doing your own research

• the minute you start doing things differently

• the minute that you take a stand

• the minute you start asking the RIGHT questions

• the minute you're not taking "NO" for an answer

• the minute you "stop being intimidated" by the Intensive Care team

• the minute you are more pro-active

that's when the Intensive Care team feels DISRUPTED, because that's not what they are used to and I can assure you that if you do all these things the Intensive Care team will notice and things will change for you.

The Intensive Care team feels DISRUPTED because they can't go on autopilot any longer and they realize that their positioning will falter in light of you having done your own research!

The Intensive Care team all of a sudden realizes that they are dealing with a powerful Family who has done their own research, they immediately know that you will do whatever it takes so that you will have PEACE OF MIND, control, power and influence!

The Intensive Care team feels DISRUPTED because you and your Family know and understand that it's up to you to challenge the STATUS QUO and get the results that you want!

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

 "CAN YOU GO HOME ON A VENTILATOR?"

You can check out last week's question here.

In this week's episode of "YOUR QUESTIONS ANSWERED" I'm coming back to one of our readers Ellie, who's Mum has been in Intensive Care for about three months now. As Ellie's Mum continues to get better she still has some challenges on her journey to recovery.

Therefore Ellie continues to ask questions and today Ellie has another question regarding her mother's swallowing after Tracheostomy removal.

My Mum has been in ICU for three weeks now and she is on ECMO for ARDS! Will she SURVIVE? (PART 5)

You can check out previous questions from Ellie regarding her Mum here(click on the links)

"My Mum has been in ICU for three weeks now and she is on ECMO for ARDS! Will she survive?"(PART 1), (PART 2), (PART 3) and (PART 4)

Ellie has also been featured in our podcast in an interview that you can check out here.

Today, Ellie writes

Hi Patrik,

writing for your advice again!

My mum finally had the tracheostomy out on Tuesday (which was actually my birthday!)

She has been eating yoghurt 3 times a day (5 teaspoons) and then had a milkshake (Fortisip) added. Since the Milkshake and the stopping of the antibiotics (which they have just re- started) she has a new infection on the lungs. The doctor showed me the X-ray taken today compared with the one on the 28th July and todays X-ray is all misty.

My mum is desperate to eat and drink and the doctor told me that it could now be weeks if not months that she won't be able to eat and drink because they think her swallow is too weak and that the food is going into the lungs (aspiration)

I've told my mum they will re look at it all on Monday. For now she has to wear the simple oxygen mask with steam 24/7 . I asked for the nose specs at night which she had last night for 4 hours before she de- saturated and they put the mask back on.

It's really upsetting. They have also said she may well go back into the ICU so they can keep a closer eye on her. I know this is for the best as the nurse is hardly around in her side room and she is still weak in her arms and hands (and the rest of her body).

I really don't want her going back into scary ICU. The doc has also made me promise I won't feed her yoghurt and has said she may end up back on the Ventilator or dead if I do.

Physio rehab has halted with just a little chest physio.

Could it really be aspiration and not the stopping of the antibiotics? It seems to me that if they have stopped the antibiotics then there is no good bacteria anywhere to return, only bad.

I know this is highly simplistic and grasping at straws. I want my mum to eat something. She says she's so weak and feels stronger and much better when she is and seemed that way to me. Plus how is her swallow going to get any stronger if she's not swallowing!?

I am also so fearful of her returning to ICU on the ventilator so I'm praying the infection will clear up over the weekend.

Any advice would be much appreciated.

Ellie

Hi Ellie,

that's a nice birthday present for you to finally have your mother's Tracheostomy removed!

Congratulations for taking this big step! You and your mother are fighters and you have shown true strength throughout this challenging and difficult time! So give yourself a pat on your back!

Overall, you and your mother have come a long way and it took a long time to get there and now the last thing you want is for your mother to have the Tracheostomy to go back in, go back on the ventilator and go back to ICU.

It would be a setback indeed to go back to Intensive Care!

From what you are describing, I am however a little worried that they might have taken the Tracheostomy out a little too early, even though I know you had to wait what felt like a lifetime for your mother to finally get there.

I know that's probably not what you want to hear and I can only make my assumptions from here without actually having seen your mother.

That doesn't mean all is lost, however if your mother has still difficulties swallowing I am wondering whether the speech pathologists have done proper swallowing tests prior to Tracheostomy removal?

It's hard to say whether the new chest infection is coming from query aspiration or from stopping the antibiotics. It can come from either or from both. Overall, I believe stopping antibiotics is the right thing to do, as antibiotics can only ever be a temporary measure and not a permanent one.

The question really is whether your mother, at any given time has aspirated while eating and if she coughed and swallowed food into her lungs then the answer would be yes, however I'm sure that would have been witnessed?

Also, with having the steamy(Nebulising) oxygen mask on 24/7 doesn't sound quite right to me. They can either give the Nebuliser intermittently(ever few hours) or what tends to be a much better option are the High Flow Nasal Prongs(http://www.fphcare.com.au/respiratory/adult-and-pediatric-care/optiflow/ ) .

They are nasal prongs that deliver humidified and heated oxygen and Patients generally love it. The hospital should have those nasal prongs, they have been around for many years!

It also tends to be very effective for Patients with lower oxygen levels and ventilation is often avoided by using them.

The constant nebulising(steaming) can be very effective as well, however is more uncomfortable. It's better to constantly nebulise than going back on the ventilator.

I really think more chest Physio is absolutely necessary for your mother as well from what you are describing. That should be a no-brainer, really needs to be ongoing and should be a priority.

Chest Physio and mobilisation in combination with continuing to eat and drink would be a good way forward.

However with eating and drinking you really do need to be careful if your mother is weak and has no strong cough and has difficulties swallowing.

I also hope that your mother is getting out of bed regularly, because eating in bed just increases the risk of aspiration.

And you're correct to point out that eating and drinking would get your mother stronger and better, however the risk of aspiration(=swallow stomach content or sputum into the lungs) needs to minimised if not excluded.

I would imagine that your mother has either an NG(Nasogastric) tube or PEG tube for feeding, however this can only be a temporary measure and your mother definitely needs to start eating again and the sooner the better!

She should have her nutritional needs met in the interim via the feeding tube and this can only be a temporary and not a long-term solution.

I know Ellie, you probably think this journey is never coming to an end, however you and your Mum have come a long way and sometimes setbacks happen.

Keep in mind your mother has been very sick and one thing that I learned over the many years in Intensive Care is that Patients recover in their own time no matter how much we all want to speed up the healing process.

Your mother's body has been more or less traumatised through the long ICU stay, so she will need time.

However the biggest challenge at the moment is to keep your Mum out of ICU and not have the Tracheostomy go back in.

I also wouldn't risk feeding her if she has indeed a weak cough.

I hope that helps Ellie!

Stay strong as you have been and even though your mother still has challenges, there is light at the end of the tunnel!

Let me know if you have any other questions!

Thank you& Kind Regards

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!

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• 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
  
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Patrik Hutzel

Critical Care Nurse

Founder& Editor

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