My daughter in-law has been ventilated with tracheostomy for four months, how can we get her off the ventilator? (Part1)

Published: Fri, 06/17/16

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 make informed decisions, 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 father is in ICU with ARDS and the Intensive Care team is withholding information! Help!

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 question from one of our readers and the question this week is

My daughter in-law has been ventilated with tracheostomy for four months, how can we get her off the ventilator? (Part1)

This question from Charlie formed part of an email counselling/consulting session with me.

Charlie has also been interviewed on our Podcast and you can listen to Charlie's interview with me here

INTERVIEW WITH CHARLIE ATKINSON WHO WAS A PATIENT IN ICU& LTAC FOR MORE THAN 12 MONTHS AND SURVIVED AGAINST THE ODDS! LISTEN TO CHARLIE’S INSPIRATIONAL STORY!

Charlie shares his daughter in-law’s situation as follows

Hi Patrik,

my daughter in law suffered a femoral tunnel blowout throughout an ACL reconstruction(=ligament reconstruction in the knee) on December 25^th.

After six weeks of conservative management she went home and then she suffered a brain aneurysm and hemorrhagic stroke on February 8th. She then got admitted to Intensive Care.

She stayed in the ICU for four weeks with all of the dire predictions and advice that "for her best interest" it would be better for her not to be resuscitated because her chances of going past a minimally conscious state were about 5%. At best she would be able to just share with her thumb. Her father and my son(her husband) resisted this completely and we said to pull out all the stops and not the plugs.

On about March 8 she was transferred from Intensive Care to LTAC(Long-term acute care) in another hospital, where I am on the patient and family advisory Council as a WNV(West nile virus) survivor with 14 months of treatment there.

Against all predictions, my daughter-in-law is beginning to recover and rehabilitate. She has the same team that dealt with my encephalitis, poliomyelitis, neuropathy, flaccid paralysis etc.

She's beginning to the function, is cerebrally aware, is moving her hands and feet, engaging in exercise rehabilitation, and now here, is using the iPad to type etc…

I have prepared a plan that I used, in retrospect, to overcome my own dire predictions for recovery, to help my daughter-in-law.

In terms of her lifestyle that the patient, family and friends are interested in and can address, we see that she needs to get a good night’s sleep with 12 hours on the ventilator so that she is rested and ready to fully participate in a rehabilitation during the day.

The rate at which she is recovering in terms of a wild guess and the longest we can expect for the healthcare providers to tolerate this is 90 days.

Similar idea with me that staying on that that was the "medically necessary and appropriate" kept me in the LTAC(Long term acute care), gave me time to get strong, staying on the event paid for with insurance, and I walked out after after being in a six-month "Boot Camp" when the Physiotherapist had said that I had plateaud and my trend line was not good.

I know that she's obese and has been for much of her adult life's severely so. I know that grains, processed food and any added sugar are the cause of much bad health in the sense that nutrition is medicine. The enteral feeding that she's on is full of calories from high fructose, corn syrup and soy and vegetable oil's and she needs to be on a whole food diet.

I don't believe it she's getting insulin now even though her sugars were high initially.

We survived the ICU in the dire predictions and now we are fighting the battle to keep her at the LTAC for longer when they're trying to "wean her from the ventilator" for a good night sleep and energy during the day. We are close to getting agreement on the Liquid Hope enteral nutrition achieved "approval" from the physician in charge and the Dietician and are now waiting for it to be approved by the chief medical officer.

If you have any advice from a Patient and family perspective in how to figure out how to guide patients and families with a creative problem-solving leadership role I would really appreciate it.

Many thanks

Charlie

Hi Charlie,

thank you for clarifying your daughter in law's situation!

And also congratulations for standing your ground!

It doesn't surprise me that your daughter in law is slowly but surely recovering!

As I explain in my articles/ videos about brain injuries, time is the best healer and you are obviously a prime example for that by having defied the odds yourself!

Well done!

Related articles/videos:

HOW LONG DOES IT TAKE TO WAKE UP FROM A TRAUMATIC BRAIN INJURY OR SEVERE HEAD INJURY?

What is the prognosis after my critically ill loved one’s brain has not had sufficient oxygen supply(hypoxic brain injury)?

Yes, recoveries after brain injuries take time and in 9 times out of 10 Families of critically ill Patients in Intensive Care need to ignore the "what's in the best interest of your loved one" from the Intensive Care team's perspective!

It's great to hear that your daughter in law has the same team looking after her that you had a great experience with!

I am also very happy to hear that you and your family are not giving up and that you've been so strong so far!

Again, give yourself a pad on the back for being so courageous and strong!

Following your own intuition and gut takes courage, as I know first hand that the Intensive Care team "always knows what’s best" and they tend to put a lot of pressure on families in Intensive Care to follow their advice with families underrating what is really at stake!

Your daughter in law probably couldn't ask for a better advocate than yourself, as you have defied the odds yourself!

As far as practical steps go in order to get your daughter in law off the ventilator, it does make sense to have her on the ventilator overnight so she can have a rest and be more energised throughout the day!

As far as I understand you are referring to the 90 day mark for ventilation in terms of insurance, as you may be concerned that the insurance may stop paying the bill, after your daughter in law exceeded a certain period in ICU/ LTAC.

Therefore it's crucial to take measured steps in order to get your daughter in law off the ventilator and then out of ICU/ LTAC ASAP.

Related article/video:

TRACHEOSTOMY AND WEANING OFF THE VENTILATOR IN INTENSIVE CARE, HOW LONG CAN IT TAKE?

And therefore her care and treatment needs to be optimised and that’s inclusive of her nutrition!

There are other things as well, such as good nursing care, getting regular showers, washes, good Physiotherapy etc…

Good nursing care is extremely important and should't be underestimated!

Also, the mindset of the people involved, whether it's your family or the health care professionals is critical and can make or break your daughter in law's care and recovery.

You and your family have already taken the first steps by not giving up and by believing in your loved one's recovery!

It sounds to me like you have faith in the LTAC team there as you've been dealing with the same team.

The nutritional issues can be brought up by you and your family with simple explanations just like you have in your email.

But the biggest challenge is to get your daughter in law off the ventilator!

Again, good nursing care is important and should not be underestimated!

Getting natural daylight and also having visits outside are important!

The good news is that you have moved well beyond the phase where you are being managed by the Intensive Care team. You have been proactive all the way along and you should continue to do so, especially since your daughter in law is making progress!

And this is often a case of simply asking for what you want and not backing away from that!

My experience shows that when families in Intensive Care/LTAC start doing this that the dynamics change and the results and outcomes change as well!

Keep at it and expect and accept only the best!

I have written extensively about long-term ventilation with tracheostomy and brain injuries and we have more Ebooks available for you if you are interested!

You should also keep in mind that in this day and age you should be looking at and considering Intensive Home Care Nursing services like INTENSIVE CARE AT HOME.

INTENSIVE CARE AT HOME services are a genuine alternative to a long-term stay in Intensive Care for long-term ventilated adults& children with tracheostomies.

INTENSIVE CARE AT HOME can provide a similar service at home and your daughter in law can very quickly improve her quality of life!

Check out INTENSIVE CARE AT HOME for more information

Here are more resources that I recommend as well when dealing with ventilation, tracheostomy and head/brain injuries.

Those Ebooks/ Videos will give you insight in how you as a family can handle this challenge, make informed decisions and get peace of mind, control, power and influence when you have a loved one on a ventilator with tracheostomy!

Here are links to the Ebooks!

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

FOLLOW THIS PROVEN SYSTEM TO AVOID THE 3 MOST DANGEROUS MISTAKES YOU ARE MAKING BUT YOU ARE UNAWARE OF, IF YOUR LOVED ONE REQUIRES LONG-TERM VENTILATION WITH TRACHEOSTOMY IN INTENSIVE CARE!

Should you require more in-depth personal consulting about your daughter in law's situation, we also offer continued support via Skype or over the phone here ONE on ONE counselling/consulting

I hope that helps Charles, please let me know if you have any other questions!

Wishing you and your family all the very best!

Patrik