My daughter in-law has been ventilated with tracheostomy for four months, how can we get her off the ventilator? (Part 3)

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 from Charlie was

My daughter in-law has been ventilated with tracheostomy for four months, how can we get her off the ventilator? (Part2)

You can check out the answer to last week’s question by clicking on the link here.

You can also check out the first part of the question 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 the next question from Charlie

My daughter in-law has been ventilated with tracheostomy for four months, how can we get her off the ventilator? (Part3)

This question from Charlie formed part of a number of consecutive email counselling/consulting sessions 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 writes

Dear Patrik,

during the last month, we have been “standing our ground” with respect to keeping the ventilator on overnight so that my daughter-in-law can get a good night’s sleep.
Now we are successfully keeping her on the ventilator from 9pm to 9am.
She is in fact sleeping 12 hours at night and is healing and resting!

She’s also able to fully participate in her own physical therapy and occupational therapy progress during the day.

We have also changed her nutrition to Liquid Hope after a battle with the medical team and the dietician.
Our plan is to let her stay on the ventilator overnight with “interval” rather than “progressive” weaning. We want to make her strong and well then wean her off the ventilator and the tracheostomy.

Pressure is coming from the health insurance to get her off the ventilator as quickly as possible, but she’s not there yet.

The medical team claims that my daughter-in-law’s vital signs are good enough to “tolerate” weaning off the ventilator and that it’s in the “Patients best interest to avoid an infection!”
It’s been a real battle with the pulmonologist at the LTAC(=Long-term acute care) and tomorrow there’s a family meeting where they are insisting that it is in my daughter-in-law’s “best interest” that she comes off the ventilator. So far we tried with little success since we last spoke and all efforts to get her off the ventilator have proven to be very difficult at the best of times!

Tomorrow we will propose a plan to get her off the ventilator in 60 days and to get her strong enough to come home without the ventilator by Christmas. Keep in mind we are now in early July and she still has a long way to go!

Our next goal is to get my daughter-in-law walking by mid-September, so we keep our fingers crossed!

I’m trying to direct things from my own experience, when I was in ICU/LTAC for 12 months on the ventilator with tracheostomy!

Perhaps next week we can arrange for a conference call. Your help is so much appreciated!

I’ll let you know what happens tomorrow.

Overall we have actually been doing quite well with the Hospital Health Board after 6 months (1 month in ICU and 5 months at LTAC) and it looks like the health insurance will extend their funding of the care as long as mechanical ventilation and the tracheostomy are medically necessary.

We are really gearing up for the meeting tomorrow.

Thanks so much for your attention and caring.

Kind Regards

Charlie

Hi Charlie,

thanks Charlie for your email.

I am sorry to hear that things are not progressing as well as you and your family wish to.

It sounds like things are progressing slowly. The good news is that they are progressing. As I have mentioned to you in the past, Intensive Care/LTAC as well as weaning off the ventilator and the tracheostomy after prolonged critical illness and prolonged mechanical ventilation can take time!

As you know weaning off the ventilator and tracheostomy is often two steps forward and one step back. It pays to be patient as you know from your own experience.

It’s smart to let your daughter in-law rest on the ventilator overnight and take her off during the day. As I have said in my last email, make sure that you give her enough time on the ventilator if she needs it and it sounds like they are doing that! Your daughter in law will take as much time as she will need to get off the ventilator!

Related article/ video:

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

Is there consensus that she should stay on the ventilator and go home with it?

As you know, I do have my own nursing service INTENSIVE CARE AT HOME and we are providing a genuine alternative to a long-term stay in Intensive Care/ LTAC for Patients who are ventilator dependent with tracheostomy! We can do at home what Intensive Care Units and/or LTAC’s are doing in a hospital!

You can find more information here

INTENSIVE CARE AT HOME

In any case I am very glad to hear that you are standing your ground.

It’s good that you have been in a similar situation last year and that you know how much effort, persistence and determination is involved to get your daughter-in-law off the ventilator! You have shown to your family already that nothing is impossible when you are faced with trying to get off the ventilator and the tracheostomy after battling a critical illness!

You mentioned that your daughter-in-law should stay clear of infection and it’s extremely important to be vigilant about it!

I have seen fairly regularly that the biggest setback for a long-term ventilated Patient with tracheostomy that can happen is an infection. It can set Patients back by many weeks in their attempts to get off the ventilator and the tracheostomy, therefore steering clear of an infection is crucial!

You’ve got to keep in mind that your daughter-in-law is very weak and her immune system is compromised after such a long stay in Intensive Care and LTAC.

Therefore catching an infection, especially in a hospital environment with many other Patients bugs floating around could well become a reality!

An infection after or during a long-standing critical illness, including ventilation and tracheostomy could also be lethal, therefore being vigilant about it is critical!

I am also happy to go on a call next week.

If you need advice for family meetings, here is an excellent resource that will help you and your family.

FOLLOW THIS ULTIMATE 6 STEP GUIDE FOR FAMILY MEETINGS WITH THE INTENSIVE CARE TEAM, THAT GETS YOU TO HAVE PEACE OF MIND, CONTROL, POWER AND INFLUENCE FAST, IF YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE!

Most families of critically ill Patients in Intensive Care don’t know what they are in for when the Intensive Care team calls for a “family meeting”! Therefore families of critically ill Patients in Intensive Care are often unpleasantly surprised because they don’t know what to expect and they don’t know how to position themselves strongly and powerfully. They simply don’t know what they don’t know!

That’s why I have created the

In any case, please let me know if you have any questions!

Wishing you and your family all the very best.

Kind Regards

Patrik

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