MY AUNTY IS IN INTENSIVE CARE ON ECMO FOR ARDS, WE’RE VERY WORRIED SHE MAY DIE! HELP! (PART3)

Published: Mon, 06/22/15

Sorry guys, same email than previously, this time with the right headline!

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 PART 2 of

”MY AUNTY IS IN INTENSIVE CARE ON ECMO FOR ARDS, WE’RE VERY WORRIED SHE MAY DIE! HELP!" (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 PART 3 of

MY AUNTY IS IN INTENSIVE CARE ON ECMO FOR ARDS, WE’RE VERY WORRIED SHE MAY DIE! HELP!” (PART3)

Lee from the UK writes

Hi Patrik,

today I went to the hospital and my auntie has been put back asleep in an induced coma.

The doctors said she was fighting against the ventilator and she is also back on dialysis as she can't get rid of her fluids. She’s not making enough urine.

She is very swollen again and mu aunty needed sedating more.

Her oxygen levels had increased as well! They say that her lungs are really wet and they are considering ECMO again.

This is quite a set back from yesterday

They also said if this 3 days lifespan on the Haemofilter/ Dialysis doesn't work they will flip her on to the ECMO again as a last chance.

They did also mention that they can only put her back on ECMO again if it’s available.

What are your thoughts?

Thanks Lee

Hi Lee,

OK I hear you.

I am sorry to hear that your aunty is currently going backwards.

Setbacks can happen during critical illness in Intensive Care, especially after ECMO and ARDS.

Whilst it doesn't sound good what you are describing, let's put some perspective around it.

Your auntie's lungs are wet, therefore they have put her back on the Haemofilter/ Dialysis Machine.

It's hard to tell from here why your aunty is breathing against the ventilator and as I said yesterday on Skype, this can happen.

Waking up from an induced coma can be a big challenge, especially when you are attached to a ventilator and you can't communicate properly. Therefore fear may be a huge factor for your aunty!

One way out of the dilemma might be to optimise your auntie's sedation, which may be challenging with her mental health issues, however it's doable.

Also, ask for your auntie's chest x-ray and what the results of her latest chest x-ray was.

And always, keep in mind that Intensive Care teams tend to be very quick in pointing out the negative and they can be very quick in painting a "doom and gloom" picture!

Recommended resources:

AVOID MISTAKES YOU ARE MAKING AND DOING THE RIGHT THINGS WHILST YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE!

PEACE OF MIND, CONTROL, POWER AND INFLUENCE EVEN IN THE MOST CHALLENGING OF CIRCUMSTANCES THAT YOU, YOUR FAMILY AND YOUR CRITICALLY ILL LOVED ONE COULD POSSIBLY FACE IN INTENSIVE CARE

You shouldn't buy into the mindset of the Intensive Care team.

I also don't like when they say that they may put your aunty back on ECMO "if it's available", almost implying that you and your family will not have any control who is making this decision…

You should always read between the lines what the Intensive Care team is saying or not saying.

Also, as I mentioned yesterday on Skype, try and get a feel whether the people in the Intensive Care unit tend to be overly negative. If that's the case you and your family need to challenge that and you need to make up your own, more positive reality.

Don't let this difficult situation wear you down or become negative!

Once again, being on ECMO for 6 days is not very long and some Patients may have to go back on it so that their lungs can heal and improve.

Related articles:

HOW LONG can a critically ill Patient stay on ECMO?

What the doctors and the nurses behaviour in Intensive Care is telling you about the culture in a unit

So, whilst there are some setbacks, they do happen and stay strong and optimistic and keep challenging the Intensive Care team and their assumptions. Only by doing so you will get to the truth of the matter.

Also, because the Intensive Care team appears to be negative and because they are trying to already limit the resources in your and in their mind, by telling you "if ECMO is available" you need to keep asking whether they don't want to spend the resources(time, effort, money, staff and also emotional resources) to get your aunty out of ICU alive.

Let me know how things go and I can help you.

Let me know if you need to go on Skype again and we can have another chat there.

Thank you

Your friend

Patrik Hutzel

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