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
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
MY PARTNER IS IN INTENSIVE CARE ON A VENTILATOR! THE INTENSIVE CARE TEAM
WANTS TO DO A TRACHEOSTOMY AND I WANT TO HAVE HIM EXTUBATED! WHAT DO I DO? (PART8)
This formed part of an 8 part consulting strategy session for one of my Clients who signed up for 1:1 consulting with me.
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 from Heather who I have consulted in the past and her question this week is
My boyfriend has Pancreatitis and is in Multi-organ failure, how long will it take for him to get out of Intensive Care?
(PART1)
Vanessa writes
Hi Patrik,
my boyfriend is in a long term care ICU facility, he was admitted to ICU at a regular hospital on the 27 December after being taken by ambulance to the ER.
We are now at 5 weeks.
He is an alcoholic, had started seeking help through his company’s HR 2 weeks prior to being admitted.
He suffers multi system organ failure and he was diagnosed with Pancreatitis, was on a ventilator for almost 2 weeks then switched to a tracheostomy and now he is still on the ventilator.
His liver function was very bad, but he had no signs of liver cirrhosis, pancreas didn't seem to concern them too much even though he had Pancreatitis,
his kidneys were the worst, he had dialysis twice the weekend he was admitted on, none for a week, then started it again to remove fluid and he was on mostly daily dialysis for 3 weeks.
He
hasn't had or needed dialysis since Tuesday-so 5 days without it, his kidney function is good, not retaining fluids like he was.
I want him to have a neurological consult but the Intensive Care
doctors are dragging their feet. No history of respiratory issues and yet they cannot wean him off the ventilator -- he gets too agitated, restless, tries to get up, heart rate and breathing goes up too.
He also has almost constant tremors or shaking of his hands and arms, but his hands are the worst-like a Parkinson’s type tremor.
They keep him pretty medicated even though he's no
longer sedated, though he was on Propofol for 3 weeks, so his level of awareness and cooperation varies greatly.
He is now on Seroquel(Quetiapine) twice daily, Clonidine every 6 hours and Ativan(Lorazepam), Haloperidol and Morphine at the nurses discretion.
He has also lost a lot of weight, muscle, his legs and arms are extremely withered, and he seems incredibly
weak.
He has feeding directly into his stomach and had a stomach bleed 2 weeks ago and required multiple blood transfusions the 3rd and 4th weeks.
I'm having a lot of trouble finding any information regarding longevity of recovery in cases like his, prognosis for full recovery, likelihood there will be permanent
neurological damage due to the alcohol abuse, the liver and kidney failures, or how to tell not only if he has encephalopathy but which kind?
The staff are mostly helpful but brush off questions regarding more serious long term complications and tell me they've seen worse. I'm also confused as to why after 5 weeks there has been no attempt at starting even basic physical therapy?
No, he can't get up, but can't they move his legs? His arms? To help prevent him becoming
weaker? Losing more muscle? And how exactly do ICU nurses determine a patient is "agitated?"
None, not nurses, doctors, none will even consider anything I have to say regarding what is normal behaviour for him, that maybe he’s not agitated-its not anxiety-he’s not actually trying to do more than get comfortable or communicate, they are so quick to just dope him up more.
One last question--I have a lot, I know!--although he's not retaining fluids his belly keeps getting hugely distended (it did this when the bleed was discovered) no signs of another bleed and no one can explain what's happening or why and even though it interferes with his breathing, no one seems to care.
It has been an absolute roller
coaster since this began, I just want a better understanding of what can happen, what kind of things to expect-time line wise-permanent wise-best how to assist with his care and how to educate myself to provide the care he will need down the road.
Many thanks
Vanessa
Hi Vanessa,
thank you for your question.
First off, I am very sorry to hear your and your boyfriend's situation! I know how you feel and I know what emotional roller coaster you are currently experiencing.
Know that there is help at hand and I will help you to the best of my abilities and that’s most likely why you have signed up for my 1:1 consulting via Skype, over the phone and via email.
Let’s look at your and your boyfriend’s current situation in detail and let’s look at how you can improve the situation and in the process get PEACE OF MIND, control, power and influence quickly!
Ok, your boyfriend has been in ICU for 5 weeks, he has had a tracheostomy for respiratory failure(the inability to breathe), he has liver failure, pancreatitis, kidney failure and he is a chronic
drinker.
The scenario that you are describing from a clinical point of view is nothing unusual. This means that critically ill Patients who are alcoholics, have liver failure, pancreatitis , kidney failure often end up getting ventilator dependent with tracheostomy.
Therefore, the situation that you and your
boyfriend are dealing with is nothing unusual from an Intensive Care perspective.
It’s good to hear that your boyfriend has been off the dialysis machine now for 5 days, that’s a good sign, even though you mentioned that he may need the Dialysis machine again.
Also, do you know if your boyfriend has been in Intensive
Care in the past for similar issues? It would also be good if you could share your boyfriend’s age so that I can get a feel for how well he might recover. Age is not all that important but it can make a difference.
Regarding the dialysis and kidney function and the fluid retention, it’s most likely that due to the heavy drinking, the pancreatitis and the liver failure he has been retaining fluids and the
kidneys couldn’t cope. That’s often what happens, hence the dialysis.
With the liver failing, there is also a high chance of fluids accumulating around the belly area as you’ve described. The medical term for it is Ascites.
This swelling around your boyfriend's belly also causes pressure on to his lungs, which adds
on to your boyfriend’s inability to breathe and/or to be weaned off the ventilator.
This often also goes hand in hand with stomach(gastric) bleeding, as he has experienced in the past. Stomach bleeds can also be a cause of liver failure, because if the liver is failing, the blood coagulation system can get out of order and critically ill Patients are more prone to bleeding.
Everything you’ve described so far is
nothing unusual from a clinical perspective in Intensive Care when patients present with pancreatitis, liver failure and kidney failure pancreatitis due to drinking.
It’s also nothing unusual that your boyfriend's experiences respiratory failure and ended up on a ventilator with tracheostomy.
Your boyfriend's is pretty sick and now we’ve got to look at how to improve your and your boyfriend’s situation in the short
and long-term.
The biggest challenge that I can see is that with your boyfriend ’s chronic alcohol abuse.
He is not only withdrawing from alcohol, he’s also withdrawing from the sedation he has had before the tracheostomy. You are talking about tremors and shaking, they are typical signs of
withdrawal.
It’s most likely one of the reasons why the Intensive care team isn’t paying much attention to what you’re saying what is “normal behaviour” for your boyfriend.
Again, he’s very likely not “his normal", given that he’s in Intensive Care on a ventilator with tracheostomy and he’s withdrawing from alcohol, sedatives and opiates(pain killers).
That combination is a challenge and that’s why they are giving him Clonidine, Seroquel, Haloperidol, Morphine etc…
The chronic alcohol abuse is most likely taking its toll and now that your boyfriend’s health has crashed he is facing all the challenges you are describing.
It looks like he is not in a position as yet to tolerate everything that is happening or has happened as yet.
He’s also most likely in a position where he suffers from halluzinations and he could be going through ICU psychosis and ICU delirium, especially after about 5 weeks Intensive Care with Multi organ failure, alcohol withdrawal and induced coma.
Related article/video/Podcast:
THE 5 THINGS YOU NEED TO KNOW IF YOUR LOVED ONE IS CONFUSED, AGITATED AND DELIRIOUS IN INTENSIVE CARE!
That doesn’t neglect the fact that the Intensive Care team shouldn’t be treating you the way they treat you and I will address that in a
minute.
As far as your boyfriend’s ventilator dependency goes, please check out this article/video/ Podcast here (click on the link)
Tracheostomy and weaning off the ventilator, how long can it take?
It’s also no surprise that the Intensive Care team doesn’t want to give you too
much insights into what’s happening in the future. It’s hard for them to predict as well.
Before your boyfriend can be weaned off the ventilator and the tracheostomy his kidneys and liver need to recover because otherwise he will lack the strength to be weaned off the ventilator and the tracheostomy.
After his major organs have recovered, the next steps are to wean your boyfriend off the ventilator, remove the tracheostomy and then get him out of
Intensive Care. The tracheostomy doesn’t necessarily have to be removed for leaving in Intensive Care, however it would be a bonus of course.
However, I couldn’t agree more
with you that they need to start Physiotherapy rather sooner than later and that they need to keep up his muscle tone so that he maintains and not loses strength.
There is absolutely no reason why your boyfriend can’t have Physiotherapy and every Intensive Care Unit I have worked in has commenced Physiotherapy usually within the first week of admission to Intensive Care.
Your job is to start managing the Intensive Care team and get what you want. You should certainly be asking for what you want in no uncertain terms, i.e. Physiotherapy etc… Get comfortable with challenging the "perceived power" and the "perceived authority" of the Intensive Care team if you want to get peace of mind, control, power and influence
quickly.
If you don’t want what 99% of the families of critically ill Patients in Intensive Care get who don’t have peace of mind, don’t have power, don’t have control and don’t have influence, you need to start acting very differently and you need to start to pro-actively manage the Intensive Care team so that they don’t manage you!
Recommended resources(Ebooks, Videos and Audio recordings/ Podcast):
MANAGING YOUR FAMILY AND THE INTENSIVE CARE TEAM WHILST YOUR LOVED ONE IS CRITICALLY
ILL IN INTENSIVE CARE
You should also continue asking questions, no matter what those questions are and no matter what response you get from the Intensive Care team.
Your job is to have as much peace of mind, control, power and influence as possible and you can get that with my help here at
INTENSIVECAREHOTLINE.COM and that’s probably why you signed up for 1:1 consulting with me in the first place.
You most likely realised that the approach that 99% of families of critically ill Patients in Intensive Care isn’t working. You have realised that if you want peace of mind, control, power and influence, you need help!
Good for you that you are seeking help through my 1:1 consulting, it’ll be for all the better!
Vanessa, I understand the roller coaster that you are currently experiencing
and I know it’s nothing short of a “once in a
lifetime” experience.
I have worked with thousands of families in Intensive Care in a clinical environment as well as through my consulting service and I know how you feel.
I hope that helps.
Stay strong and keep
asking questions.
Thank you& Kind Regards
Your friend
Patrik
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Patrik Hutzel
Critical Care Nurse
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