My Mother is in long-term care with tracheostomy, on the ventilator and in kidney failure! When is enough enough? (PART1)

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 Part 2 of a counselling session with one of our readers

My boyfriend has Pancreatitis and is in Multi-organ failure, how long will it take for him to get out of Intensive Care? (PART2)

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 Mother is in long-term care with tracheostomy, on the ventilator and in kidney failure? When is enough enough?(PART1)

This formed part of a two part phone/Skype counselling strategy session for one of my Clients who signed up for 1:1 phone/Skype counselling with me.

Dawndeena writes

Hi Patrik,

My Mom went into the hospital on January 28th. she was having trouble breathing. They initially put her on the BIPAP machine and it wasn’t helping. So they got her permission to intubate her and she has been going downhill since.

She was in very good health especially for her age. She’s 72. Anyway she is now in a long- term care facility and we’ve been trying to wean her from the ventilator for the last week.

She stayed in Intensive Care for about two months and the they moved her to long-term care in the last couple of week.

The first week in long-term care went very well. She was up 3 times a day for 4 hours. We’ve been having issues with her retaining fluids. Now she has been building up fluids on her lungs and they have talked about using dialysis to get rid of her excess fluids.

We’re afraid with all the diuretics(=medication to increase urine output) they’ve used that it has caused some damage to her kidneys. When is enough enough?

She is sometimes coherent and has even mouthed the words ”help me”. What do we do??

They took her catheter out for a few days because they were concerned about infection and then they wanted to put it back in because of the diuretics and they were concerned about the skin breaking down.

Which to tell you the truth was our concern from the start of them taking it out. The very day they put the catheter back in it was bloody. So they have been flushing it for 4 days. Which I feel is causing some of the water retention. Anyways, that’s just part of our story. I know it’s confusing and I’m probably missing a lot of information, I just wanted to write!

And yes she does have a tracheostomy. Last week her trials off the ventilator were good and now not good at all. They might be considering dialysis to help remove the fluids from her lungs. I’m very worried that my mother will have kidney failure and that will be our last stop.

Many thanks

Dawndeena

Hi Dawndeena,

thank you for clarifying that your mother has a tracheostomy.

That gives me a good overview of what’s been happening.

Also, give yourself a pad on your back for seeking out for help and for speaking your truth that you are frustrated with this situation!

This is the first step in the right direction.

Whilst I can’t cure your mother, I am certainly able to help you take the right steps dealing with this situation effectively so that you can have peace of mind, control, power and influence no matter what the outcome of the situation is going to be.

And your email is not confusing at all, as you suggested in your first email.

Given that I’ve worked in Intensive Care for more than 15 years, the scenario you are describing is something that I am very familiar with.

Let’s look at your mother’s situation from a bigger picture point of view before I can go into details.

Your mother has been in good health for her age of 72 years.

She went into hospital/ Intensive Care on the 28th of January this year for breathing problems that got her on to a BIPAP machine and eventually she got intubated.

They couldn’t wean her off the ventilator and she ended up with a tracheostomy and eventually went to a long-term care facility in order to wean her off the ventilator.

Those attempts to wean your mother off the ventilator have failed thus far and sadly you have experienced your mother going “downhill” since she’s been admitted to hospital.

Furthermore, your mother has also been experiencing kidney failure and the Intensive Care team have now started to wean her off the ventilator for the first time over the last week.

Those are the facts and lets now look at what has happened and what is most likely to happen over the next week or two.

Weaning a critically ill Patient off the ventilator in Intensive Care or in a long-term care facility is often a process and not an event.

That process often includes taking two steps forward and one step back as you’ve described.

Patience is key and often it’s a long road ahead.

Your mother may have done well to start off with but then went backwards.

This is nothing unusual after a long-standing critical illness with ventilator dependency and tracheostomy.

Weaning off the ventilator can take time.

Related articles/ videos(click on the link below):

Tracheostomy and weaning off the ventilator in Intensive Care, how long can it take?

THE 7 ANSWERS TO THE 7 MOST FREQUENTLY ASKED QUESTIONS IF YOUR LOVED ONE REQUIRES ONGOING MECHANICAL VENTILATION WITH TRACHEOSTOMY IN INTENSIVE CARE!

Next, the Intensive Care team has suggested to put your mother on a kidney dialysis machine and start to remove fluids.

This only makes sense, given that so far she has failed to be weaned off the ventilator. And yes, not having a catheter may cause urinary retention but it doesn’t necessarily have to.

However you are right on track by saying that not having a catheter may cause skin break down which is something your mother needs to avoid in such a difficult situation.

Having a catheter however is also a huge risk for infection, therefore not having a catheter is preventing infection!

Anything that may spoil your mother’s already fragile and vulnerable condition should be avoided at any cost.

As far as using the Diuretics(=medication to increase Urine output) is concerned, they certainly shouldn’t be overused, however they are often the only way to keep critically ill Patients off the Dialysis machine, therefore using them instead of Dialysis makes sense. And yes an overuse of Diuretics can cause kidney failure…

You may have to be more assertive in order to get what you want and you may have to get comfortable in starting to “manage” the Intensive Care team, something 99% of families in Intensive Care don’t even consider as an option.

But that’s also why those passive families don’t have peace of mind, control, power and influence!

I know you’ve downloaded your “INSTANT IMPACT” report and you may have already seen in the report how you can start to pro-actively manage the Intensive Care team so that they don’t manage you.

As far as the fluid retention and the dialysis machine goes, know this.

Your mother has excess fluids on her lungs due to fluid retention that may well and most likely contribute to her having difficulties of not being able to be weaned off the ventilator.

Therefore Dialysis and fluid removal is most likely the next possible step.

Those are the things that happen from a clinical point of view and I know you are asking how much is too much and how long is too long to treat your mother in such a desperate, challenging and difficult situation?

I can’t answer this question for you, but what I do know is that many Patients even after a long standing critical illness do survive and leave Intensive Care.

I know it’s horrible watching your mother suffering in such a difficult situation and I know that you probably feel tired and worn out after seeing your mother in ICU/ Hospital for 3 months. You must be tired too.

So as a first step start looking after yourself too, because you will need strength and stamina no matter how this situation ends.

You may unconsciously make some of the mistakes that most families of critically ill Patients in Intensive Care are constantly making and there’s more information here

FOLLOW THIS PROVEN SYSTEM TO AVOID THE 3 MOST DANGEROUS MISTAKES THAT YOU ARE MAKING, BUT YOU ARE UNAWARE OF, IF YOUR LOVED ONE IS A CRITICALLY ILL PATIENT IN INTENSIVE CARE!

To give you some perspective, one of my other Client’s Mother was in ICU for nearly four months and her mother went through a similar nightmare situation.

The Client never gave up and her mother after a long ordeal left ICU- not without experiencing setbacks- to fully recover.

You can check out the Client’s story including an interview here

My Mum has been in ICU for three weeks now and she is on ECMO for ARDS! Will she SURVIVE?(PART 1)

My Mum has been in ICU for three weeks now and she is on ECMO for ARDS! Will she SURVIVE? (PART 2)

there were 7 or 8 questions in total and you can find links to all of the questions when clicking on the links

I hope that all of this gives you some perspective.

My skype ID is patrik.hutzel

Please let me know if you have any more questions and I will happily answer your questions and guide you through this challenge!

Don’t give up and stay positive!

Patrik

How can you become the best advocate for your critically ill loved one and get PEACE OF MIND, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?

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In Your FREE “INSTANT IMPACT” report you’ll learn quickly how to get PEACE OF MIND, real power and real control and how you can influence decision making fast, whilst your loved one is critically ill in Intensive Care! Your FREE “INSTANT IMPACT” Report gives you in-depth insight that you must know whilst your loved one is critically ill or is even dying in Intensive Care! Sign up and download your FREE “INSTANT IMPACT” REPORT now by entering your email below!

In your FREE “INSTANT IMPACT” REPORT you’ll learn how to speak the “secret” Intensive Care language so that the doctors and the nurses know straight away that you are an insider and that you know and understand what’s really happening in Intensive Care!

In your FREE report you’ll also discover

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
How to eliminate fear, frustration, stress, struggle and vulnerability even if your loved one is dying
5 mind blowing tips& strategies helping you to get on the right path to PEACE OF MIND, control, power and influence in your situation
You’ll get real world examples that you can easily adapt to your and your critically ill loved one’s situation
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 episode of “YOUR QUESTIONS ANSWERED”and I’ll see you again in another update next week!

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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!

Your Friend

Patrik Hutzel