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 one of our readers and in fact the question of the last two weeks were the first and the second part of this question
You can check out the answer to last week’s question here.
In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer Ellie’s next question as her mother continues to be in Intensive Care!
“My Mum has been in ICU for three weeks now and she is on ECMO for ARDS! Will she survive?”(PART 3)
thank you once again for your detailed reply. It’s a great help to make me feel more in control and empowered. Yes you are right about the time out. I had Saturday off and went in today.
The doctor and nurses are taking on board my questions and queries so that’s really nice to know.
They are also taking the cd playing and peace and quiet aspect seriously with improvements.
My current focus is now with her physical rehab as this is the most distressing thing to me and I have realised is probably for my mum as well. I’ve been told she has ‘critical illness myopathy’.
Their rehab focus is on her chest and not with her arms, hands, legs and feet. I have tried to lay down for 20 mins not moving my limbs and it is very hard. Torture really. I too end up moving my head from side and grimacing like my mum does.
I desperately want them to do more but have been told she is too weak with no tone and they can’t do anything with her yet.
But I feel the longer they leave if the worse it will be. If she could move, this whole situation would be much easier I’ve realised.
If you have any advice in this, I really appreciate it . Thanks again. I had to send that last email quickly as my baby woke up.
So it has occurred to me that my baby waking roughly 6 times a night to breast feed possibly has a lot to do with my intense empathy for my mum as his cry is so primitive and whenever he cries and I comfort him, I think of my mum not bring able to cry or be comforted when she is really most in need of it.
Also knowing my mum has such a vivid imagination (she had synathesia as a child for example) and a tendency for it to be negative I know her mind so well and have always tried to show her the nice things in life , although she had a bad childhood with a violent father, and attracted bad things to her by focusing on the darker side of life.
My next question is, is there any medication she can be given that can give her mind a nice experience? I have heard that morphine is like sitting in a cloud! She is really into her chemical highs. She tried LSD in the 60s many times and had great experiences. If i could help her have a nice experience somehow that would’ve so amazing. I’m trying externally with the music and massage. So just a thought. Is it possible!!? (They have weaned her off the Clonidine and taken her off. The Fentynal and swapped with an oral opient that begins with O.
good to hear that you’ve taken time off! I think you should continue to make sure that you get a rest. Your health, your sanity and your wellbeing are at least as important as your mother, if not more important!
As it relates to the physical rehabilitation and the Physiotherapy for your mother, I call BS for everything they are telling you, except that she has “critical illness myopathy”.
There is absolutely no reason why they can’t commence Physiotherapy for her myopathy and you are correct to say that it is horrible to lie down and not being able to move.
It does make sense that the chest Physio should be priority given the nature of her illness and you are absolutely correct to point out the negative effects by not doing/ offering Physiotherapy on her other body parts.
I strongly believe that holistic care includes focusing on all needs that improve wellbeing. The fact of the matter is that the Physiotherapists are probably working with limited resources and their focus currently lies on chest physio.
However by improving your mother’s general condition through Physiotherapy and through movement can of course improve her condition. Here’s what you need to do in order to get them to do what you want:
1) Ask them how many times a day she gets Physiotherapy
2) Ask them whether they can build in some other Therapy to get her moving and tell them about your experiences when lying down for 20 minutes without moving
3) Tell them about what your thoughts about “holistic care” are
4) Ask them whether your mother gets Physiotherapy on weekends as well
5) Take a look and find out how much time the Physiotherapists spend “doing” Physio and how much time they spend on documentation/ paperwork
6) Ask them whether they spend more time on other Patients that they give a higher priority to, i.e. do they have a bigger interest in treating other Patients first for obvious reasons such as medical research interests and funding reasons?
6) Keep asking for what you want and don’t expect anything less
7) Continue to be “difficult and demanding” and take a look at this blog post here The 5 reasons why you need to be DIFFICULT and DEMANDING when your loved one is critically ill in Intensive Care It also shows them that you’re not giving up, that you take matters very seriously and that you are paying attention to detail.
As it relates to your mother’s pain killers, there are a number of things you need to know:
1) Morphine can give you highs and it can also give you hallucinations and nightmares. Most of the times it gives people highs and it works very well for pain. When it causes hallucinations and nightmares it’s not fun and in those circumstances it needs to be ceased
2) Given that Fentanyl is off, which I think is good, as it’s even stronger than Morphine, they have looked at other alternatives. I assume your mother is now on either Oxycontin or Oxycodone. They are both Morphine based opiates and tend be very effective for pain. Given that your mother is already delirious it’ll be difficult to say on how effective Oxycontine or Oxycodone are going to be. They both have a tendency to cause nightmares and hallucinations as well in some Patients(not many)
3) It’s also good to see that she’s off the Clonidine, unless she is on other stuff now? Look, as far as your mother’s chemical “highs” are concerned, she would have had plenty of those during her ICU stay. Whether Morphine, Fentanyl, Propofol, Midazolam etc… would have caused some chemical “highs” one way or another.
There is no easy way out of this and no “magic pill”. I think if anything, it’s important to clear her system of as many drugs as possible so that you get to see your real mother.
I hear your concerns with her not being able to cope because of things that happened in the past and I agree to a point that now is not the time to address any psychological damage that may have been caused in the past, however I think if anything it should be less and not more drugs.
I think your and the Intensive Care team’s focus should be on clearing the infection, getting her moving through Physiotherapy and also keeping an eye on the chest drains that I think need to come out rather sooner than later.
Weaning your mother off the ventilator will be next! And also don’t forget that you need to continue looking after yourself and that you shouldn’t be there every single day! I hope that helps Ellie! Keep up the good work and let me know if you have any other questions!
Thank you& Kind Regards
How can you have PEACE OF MIND, control, power and influence whilst your loved one is critically ill in Intensive Care?
You get to that all important feeling of PEACE OF MIND, CONTROL, POWER AND INFLUENCE when you download your FREE “INSTANT IMPACT” report NOW by entering your email below! 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 “killer” 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 “YOUR QUESTIONS ANSWERED” and I’ll see you again in another update next week! Make sure you also check out our BLOG section for more tips and strategies or send me an email to sup[email protected] with your questions!
This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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