In the last blog I talked about

5 things the Intensive Care team hasn’t told you when your loved one is critically ill in Intensive Care!

You can check out the last blog by clicking on the link here.

In this week’s blog I want to talk about

How to stay positive when your critically ill loved one is on the ventilator with tracheostomy for many weeks!

Before I get into today’s topic I want to share a quote with you that I wrote on today’s topic and the quote says

Mechanical ventilation with tracheostomy in Intensive Care can be one of the most frustrating experiences for critically ill Patients and their families!

If the critical illness of your loved one hasn’t already been testing your and your family’s patience, your stamina, your resilience, your faith and your belief system to the max, many weeks of mechanical ventilation with tracheostomy will be testing you even more!

If you have found yourself and your critically ill loved one in this “once in a lifetime” situation that you know you can’t afford to be getting wrong, you are probably already wondering what’s next and how long this ordeal will last for your critically ill loved one!

Most families of critically ill Patients and their families in Intensive Care who have a loved one on mechanical ventilation with tracheostomy for many weeks- and sometimes many months-  don’t know what to do, they don’t know what questions to ask, they are often impatient, they don’t look at the bigger picture and they don’t know how to stay positive when faced with this massive challenge where the odds seem to be stacked against you!

Therefore it’s crucial that you and your family do your own research, put things in perspective, start asking the right questions, question the Intensive Care team and rally all of your resources to stay positive and help your critically ill loved one to get through this massive challenge!   

So let’s get into today’s topic!

Mechanical ventilation with tracheostomy for many weeks and in some instances many months in Intensive Care is one of the most frustrating and also one of the most researched topics here at INTENSIVECAREHOTLINE.COM

Many of our clients and also many of our visitors to our website want to know more about this topic because by the time they are starting to do their own research and by the time they are looking for help they are usually at their wits end.

So therefore today I really want to focus on how I can give you perspective and on how I can help you to stay positive whilst facing the odds and while your critically ill loved one is facing this ordeal!

Mechanical ventilation with tracheostomy usually starts out with ventilation with a breathing tube or endotracheal tube.

If your loved one can’t be weaned off the ventilator, they then get a tracheostomy inserted.

Related articles/videos:

• How long can a breathing tube or an endotracheal tube can stay in?

• HOW LONG SHOULD A PATIENT BE ON A VENTILATOR BEFORE HAVING A TRACHEOSTOMY?

• Why would a critically ill Patient in an induced coma need a tracheostomy in Intensive Care?

Getting a tracheostomy in Intensive Care in the first place is usually a result of  your loved one being in one of the following situations

• very unstable and in a very critical condition

• in a life threatening situation

• not “waking up” after an induced coma

• in Intensive Care for long-term treatments and long-term stays

• having a severe(traumatic) head or brain injury

Other challenges that could be a result of having your loved one being ventilated with tracheostomy for many weeks or even many months are that they might be that your critically ill loved one is

• threatened with an “NFR”(Not for resuscitation) or “DNR”(Do not resuscitate) order

• In a situation where the Intensive Care team suggests a “withdrawal of treatment” or a “limitation of treatment” as being “in the best interest” for your critically ill loved one

• approaching their end of life in Intensive Care 

The fact of the matter is that the stakes are extremely high for you, for your family and also for the Intensive care team when your loved one is critically ill in Intensive Care and require mechanical ventilation with tracheostomy!

Staying positive when you are faced with this massive challenge when your loved one requires mechanical ventilation with tracheostomy for many weeks and many months is what can often make all the difference between getting your  critically ill loved one out of Intensive Care alive or not.

This is easier said than done, however given that I have worked in Intensive Care for more than 15 years in three different countries, where I have literally worked with thousands of critically ill Patients and their families and where I have also worked as a Nurse Unit Manager for more than five years, I have seen and looked after many long-term ventilated Patients with tracheostomies staying in Intensive Care for many weeks or even months and in some rare instances even years.

I have also counselled and consulted many families in Intensive Care who have or had a loved one in Intensive Care on a ventilator with tracheostomy for many weeks and many months.

I also have experience in looking after mechanically ventilated adults& children with tracheostomies in their own home as a genuine alternative to a long-term stay in Intensive Care.

Watching your critically ill loved one suffer and getting depressed!

I get it.

If you and your family watch your critically ill loved one suffer on mechanical ventilation with tracheostomy in Intensive Care and many weeks or many months have gone by I know how difficult it is to stay positive!

I know how you feel when you see no progress, when you see your loved one taking one step forward and one step back, I know how you feel when you see your loved one getting depressed and lethargic because of the sterile ICU environment and I know how you feel when you and your family spend day and night in Intensive Care putting your life on hold to be with your loved one!

It’s an extremely difficult situation to be in, no question!

And on top of all of the frustrations because you can’t see much progress, you are probably also thinking about the future and about the possibilities if your loved one can’t be weaned off the ventilator!

As I said before, besides facing a “real” end of life situation, this is probably the next biggest challenge for families in Intensive Care!

Especially when your loved one is making no or little progress in getting weaned off the ventilator and/or the tracheostomy, you feel like throwing in the towel and you feel like there is no hope.

Related article/video:

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

I know, you might have seen numerous attempts failing to get your loved one off the ventilator or you might have seen your loved one catching another infection or sepsis, setting them back for weeks!

And on top of all those challenges you probably have a negative Intensive Care team who may or may not be prepared to invest all of the emotional, financial, equipment and staffing resources needed to get your critically ill loved one out of Intensive Care alive!

You see, one of the biggest problems in Intensive Care is that at some point, your critically ill loved one might have reached the three month mark in ICU where they are still on a ventilator with tracheostomy and they are making no progress.

By now you might have the Intensive Care team talking about a “DNR”(Do not resuscitate) or “NFR”(not for resuscitation) order or even worse they may be talking about a “withdrawal of treatment” or a “limitation of treatment” as being “in the best interest” for your critically ill loved one, because they think or perceive your critically ill loved one will have no “quality of life”.

That’s pretty bleak and it offers little or no hope.

If you are finding yourself in a situation like this you need to very quickly get some perspective in order to get the best outcomes that you and your family want and deserve for your critically ill loved one.

First of all you need to understand how an Intensive Care Unit operates and how Intensive Care teams think and also how they often use their “perceived power” and their “perceived authority” to get what they want.

Let me say this again because it's so important! Intensive Care teams often use their "perceived power" and their "perceived authority to get what they want, not what you want!

And if you are like 99% of the families of critically ill Patients in Intensive Care you will buy into the “perceived power” and “perceived authority” of the Intensive Care team and you will make no informed decisions, you will get no peace of mind, no control, no power and no influence!

Given that you are reading this right now, there is a very good chance that you’ve already realised that what 99% of the families of critically ill Patients in Intensive Care is not working.

Let’s give you some perspective here and let’s get you on your way to staying positive

• First, weaning your critically ill loved one off mechanical ventilation with tracheostomy can take time but is possible

• Next, even if weaning off the ventilator and the tracheostomy fails, you need to know that a genuine alternative to a long-term stay in Intensive Care exists with INTENSIVE CARE AT HOME services. Find out more information here http://intensivecareathome.com

• INTENSIVE CARE AT HOME can also wean your critically ill loved one off the ventilator at home

• Even after many weeks or even many months in ICU/LTAC your loved one can come off the ventilator and the tracheostomy

• Sometimes a weaning off the ventilator is possible but not a weaning off the tracheostomy

• Quality of life with mechanical ventilation and a tracheostomy is possible at home with services like INTENSIVE CARE AT HOME

• Intensive Care Units and Intensive Care teams often have limited insights about what’s possible and therefore it’s a lot easier to suggest that a DNR(Do not resuscitate), an NFR(Not for resuscitation) order, a withdrawal” or a “limitation of treatment” is in the “best interest” for your critically ill loved one without genuinely looking for genuine alternatives like INTENSIVE CARE AT HOME

• Intensive Care teams often think that quality of life isn’t possible at home when ventilated with tracheostomy and therefore they have a subjective and limited view about quality of life without really knowing what it really means

• Quality of life and/or quality of end of life are highly sensitive subjects and only you, your family and your critically ill loved one should know what it means for you and your family

• Intensive Care units often have way bigger and almost always “hidden agendas” that go way beyond your critically ill loved one’s diagnosis, prognosis, care and treatment, therefore whatever the Intensive Care team is telling you needs to be taken with a grain of salt and needs to be put in context around their “hidden agenda” and what’s happening “behind the scenes” in Intensive Care

• You and your family need to educate yourself around putting things in perspective, standing your ground, staying positive, challenge the Intensive Care team and their assumptions and therefore getting the best outcomes for your critically ill loved one!

• Even if your critically ill loved one is inevitably approaching their end of life when mechanically ventilated with tracheostomy you might want to consider things like “quality of end of life” services at home rather than your loved one approaching their end of life in Intensive Care. Again, INTENSIVE CARE AT HOME can make this possible

• You and your family also need to find out what you can do to get your loved one off the ventilator if the Intensive Care team/LTAC team isn’t prepared or can’t do it

Further reading

• 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!

• THE 10 THINGS YOU DIDN’T KNOW ARE HAPPENING BEHIND THE SCENES IN INTENSIVE CARE THAT HOLD YOU BACK FROM HAVING PEACE OF MIND, CONTROL, POWER AND INFLUENCE, WHILST YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE!

With all this information at your disposal you are now in a very good position to make informed decisions, get peace of mind, control, power and influence and you are now in a position to stay positive!

Your friend

Patrik Hutzel

PS: I only have one slot left for counselling/consulting left for this week, as I'm fully booked otherwise. Let me know if you want the one slot left by hitting reply to this email or by calling me on one of the numbers below!