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 PODCAST I've featured Delia Scales from Wikihospitals.com and we talked about
How apps and technology can improve PEACE OF MIND, control, power and influence
for Families in Intensive Care!
You can check out last week's PODCAST here
In this
week’s PODCAST we feature Anthony Bartl, a young man who has been ventilator dependent with tracheostomy since the age of 6.
Anthony is a remarkable, inspirational and outstanding character and he is now a young man, living a good quality of life despite being ventilator dependent with tracheostomy!
Listen to Anthony and be inspired how you can overcome extreme adversity and still be a happy person!
Listen to Anthony's interview here
http://intensivecarehotline.com/podcast-with-anthony-bartl-a-young-man-who-is-ventilated-with-tracheostomy-at-home-listen-to-anthonys-inspirational-story/
In the interview Anthony is sharing his experiences about
- How he ended up with a high spinal cord injury after an accident when crossing road as a 6 year old
- How he became fully ventilator dependent with tracheostomy since
- How he manages to talk despite the tracheostomy and ventilation and how he manages being very articulate
- What his day looks like and how he lives a good quality of life despite all the challenges he is facing
- How
Anthony’s 24/7 care is funded
- How his parents challenged the insurer and got funding
- His non- hysterical and level headed parents
- His Non- hysterical carers involved in Anthony’s care
- The alternatives Nursing home or Intensive Care as opposed to living a good quality of life at home
- How Anthony can direct his own
care
- Anthony’s adventures and how he managed to go snorkelling and on an exciting overseas trip
- Anthony shares why looking after his body is so important despite being ventilated so that his disability won’t hold him back to have a good quality of life
- His daily rest in the afternoon
- Having a good night’s sleep
- How Anthony won’t let his disability hold him back to achieve his goals
- How Anthony is going after what he wants in life and he won’t let anything stand in his way
- Why Anthony believes that we only have one shot at life, so don’t let your circumstances
hold you back and make the most out of it
- How Anthony is an inspiration to everyone he comes in contact with
- Anthony has done a teaching degree and wants to be primary school teacher
- He is now entering voluntary work to start his career as a school teacher
- Anthony is writing with a mouth stick on his computer for his local newspaper
- Giving back to the community
- Anthony’s advice for other Patients and families in a similar situation when they are long-term ventilated with tracheostomies
- What Anthony thinks about the movie “a million dollar baby” and the main character in the movie
- Life is not worthless no matter the challenges or circumstances
- Anthony changed his paradigm and made a huge mindset shift by looking what he still had and not what he didn’t have
- Anthony won’t let his disability define him
Here is how you can contact Anthony Bartl
Listen to Anthony's inspirational interview here
http://intensivecarehotline.com/podcast-with-anthony-bartl-a-young-man-who-is-ventilated-with-tracheostomy-at-home-listen-to-anthonys-inspirational-story/
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 our readers and the question last week was
“CAN I TAKE MY LOVED ONE HOME ON A VENTILATOR TO DIE?”
You can check out the answer to last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer another question from one of our readers and the question this week is
MY PARTNER IS IN INTENSIVE CARE AFTER A BLEED ON A BRAIN! WE ARE WORRIED THAT THE INTENSIVE CARE TEAM WANTS TO SWITCH OFF THE VENTILATOR! HELP!
Andy from the UK writes
Hi Patrik,
My partner is 44 she had a brain bleed and she is also a dialysis Patient and has been for about 2
years.
She is on the ICU and is being assessed on the Glasgow point system she raises her hand to command most of the time and squeezes a hand.
Also, she has only today and for a split second only opened her eyes but not to command.
We are worried that the Intensive Care team is looking to switch the ventilator off!
All was looking good on last Wednesday when we talked with the Intensive Care team, but Thursday out of the blue a Neuro doctor told us that there was a pin size area on her brain stem damaged, which means she is highly unlikely to wake up!
The brain
bleed was on 10/12/2014 and my partner was rushed to hospital and operated on that night following deterioration.
She still has the tube down her throat and has only had a CT scan before the op and again last Wednesday.
Also she has been on treatment for an infection, could this be a factor? I'm not sure what to ask but any advice would be appreciated.
Also do you know about the area on the brain stem being talked about or where we can find
information to help us?
Thanks Andy
Hi Andy,
thank you for making contact!
I am very
sorry to hear what you and your partner are currently going through!
Head and brain injuries, including spontaneous bleeds on the brain can be some of the nastiest diseases one can ever encounter in Intensive Care!
And rule number one is, do not give up irrespective of what the Intensive Care team is telling you!
Your biggest challenge from what I can see is to see any positive signs, as you have only had negative and challenging news so
far!
As a first step I would strongly recommend to work on your mindset, which needs to be more positive! This can be challenging, especially when you are facing such devastating and challenging news like you have in the last few days!
Here is a link to an article that will help you to stay focused and positive!
How to stay positive if your loved one is critically ill in Intensive Care
http://intensivecarehotline.com/stay-positive-loved-one-critically-ill-intensive-care/
Next, you need to stop buying into the mindset of the Intensive Care team who
is talking about “switching off the ventilator”!
It sounds to me like you are half way there anyway, because otherwise you wouldn’t be reaching out for help and you wouldn’t be doing your own research!
Also, as it relates to the Neurology or Neurosurgery team who is referring to a “pin size area on her brain stem damaged, which means she is highly unlikely to wake up!”, you should be solely focusing on the positive signs in your situation which is that your partner has had her eyes open, even if only for a split second.
Critically ill Patients after head or brain injuries, including spontaneous bleeds on the brain, who have been in an induced coma, can take a very long time to “wake up”.
Related article
How long does it take to wake up from a Traumatic brain injury or severe head injury?
Critically ill Patients with severe head or brain injuries, including spontaneous bleeds on the brain tend to take a lot longer until one might see signs of “waking up”!
Therefore Intensive Care teams tend to be quick to point out
that “switching off the ventilator” or in other words a “limitation of treatment” or a “withdrawal of treatment” might be “IN THE BEST INTEREST” of your partner!
This is ludicrous from my perspective given
the young age of your partner! The Intensive Care team should move “heaven and earth” to get your partner out of Intensive Care alive and send her to rehab, period!
The positioning of the Intensive Care team in those challenging and also “ONCE IN A LIFETIME” situations is more often than not a direct result of what’s happening “BEHIND THE SCENES” in Intensive Care!
What’s happening “BEHIND THE SCENES” in Intensive Care is often by far more powerful and by far more important for the Intensive Care team than what’s happening clinically!
Especially when it comes to severe head or brain injuries, including spontaneous bleeds on the brain, the Intensive Care team knows that the road to
recovery can be a lengthy road and therefore the overarching interests of the Intensive Care team such as
- Their financial interests, I.e. if they continue treating your critically ill loved one for their bleed on the brain with an uncertain outcome, the Intensive Care team may want to protect their financial
interests and therefore “sell” you and your family on a “withdrawal of treatment” or a “limitation of treatment” as being “IN THE BEST INTEREST” of your critically ill loved one, in order to protect their financial interests and use the resources for other Patients where they think they can make money and/or meet their budget targets
- Their bed management strategies, such as when they are facing a high demand on their precious, scarce, expensive and “in demand” Intensive Care beds, the Intensive Care team often wants to give preference to critically ill Patients who don’t end up in ICU long-term! Patients with spontaneous bleeds on the brain can often have an increased length of stay in Intensive Care and therefore
potentially “block beds” in ICU
- The politics, the hierarchy, the power play and power struggles, the dynamics, the competing interests, the intrigue and the psychology in Intensive Care often have a massive impact on how the Intensive Care team is positioning your critically ill loved one’s diagnosis
and prognosis!
- The medical research interests, i.e. is your partner falling into a medical research category, where the Intensive Care team can conduct medical research that attracts multi-
Million Dollar $$$ funding per year? If your partner doesn’t fall into a medical research category then the Intensive
Care team might be quick in pointing out that “switching off the ventilator” might be “IN THE BEST INTEREST” of your critically ill loved one without disclosing their real interests!
- Their reluctance to make the emotional commitment to invest fully
into your partners recovery in Intensive Care! Getting critically ill Patients with severe head or brain injuries, including
spontaneous bleeds on their way to recovery can often take considerable physical and emotional resources! Depending on the culture of the Intensive Care team or the culture in the Intensive Care unit, they may not be prepared to “invest” their physical and emotional resources! You therefore need to be prepared to stand your ground, irrespective of the agenda the Intensive Care team is driving!
Related article
What the doctors and the nurses behaviour in Intensive Care is telling you about the culture in a unit
As it relates to your question about your partners brain stem and the “pin size area on her brain stem damaged, which means she is highly unlikely to wake up!”, which
the Neuro team has been referring to.
I am not a doctor and I am not medically qualified, so I can’t answer your question as it relates to the brain stem, however your biggest leverage point thus far is to look at your partner having opened her eyes! This is what you should be basing your judgement
upon!
Related Article
How to take control if your loved one has a severe brain injury
and is critically ill in Intensive Care
What’s also incredibly important for you to know is that whenever the Intensive Care team is suggesting a “withdrawal of treatment” or a “withdrawal of life support” as being “IN THE BEST
INTEREST” of your critically ill loved one, it’s often a very short sighted view and it only focuses on their specialist and limited views about Intensive Care!
Intensive Care team are the specialists about Intensive Care but they are no specialists about what’s happening outside Intensive Care! The
minute a Patient leaves Intensive Care, Intensive Care teams have no idea what’s happening from there!
Therefore, the Intensive Care team’s view is a perception about what might be happening outside of Intensive Care!
Your job may well be to talk to the Neurosurgeons or Neurology in order to find out Rehabilitation opportunities for your partner! You may have to bypass the Intensive Care team and take matters in your own hands and you may have to look further in order to also show the Intensive Care team that you are prepared “to do whatever it takes” to get your critically ill loved one
out of Intensive Care!
Don’t buy into the “doom and gloom” of the Intensive Care team!
Here are also
some articles that will further help you
Also check out this question from one of our readers who has been in a similar situation
My Dad is in ICU after a SUBDURAL HAEMATOMA, he’s had MULTIPLE
SURGERIES and he’s NOT WAKING UP! Help!”(PART 1)
I hope that helps Andy! Please let me know if you have anymore questions!
Wishing you and your partner the very best!
Please let me know if you have any questions. Send your questions to support@intensivecarehotline.com
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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Our information products are 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
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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 (including traumatic brain injuries and stroke)
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Your Friend
Patrik Hutzel
Critical Care Nurse
Founder& Editor
WWW.INTENSIVECAREHOTLINE.COM