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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 the question last week was the first part of this question
“My Mum has been in ICU for three weeks now and she is on ECMO for ARDS! Will she survive?”(PART 1)
You can check out the answer to last week’s question here.
Ellie has also been featured in our podcast in an interview that you can check out 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 2)
Hi Patrik,
thank you once again for your detailed reply . It’s a great help to make me feel more in control and empowered.
As you know, my mother has a hole in each lung that are getting bigger. These are from the damaged lung tissue from the pneumonia and the ventilation. One of the holes is leaking pus on the side of the lung by Rib cage so they have a drain which is taking it out. She is on the Fentanyl for the pain this drain is causing which is like Pleural pain apparently. The antibiotics are working on the infection (although slowly and no change last night)
She is wide awake and not sleeping (no sleep at night for last 3 days) she is looking distressed and she’s screaming some of the time. The doc said she will have serious delirium from the infection. Does that sound right to you?
She is taking : 30mg Clonidine per hour and 50mg of Fentanyl per hour which they are weaning slowly .
Also the lorazepam (1mg per hour) and Quetiapine.
Here’s my questions to you.
The doctor says bugs can hide in the outside of the holes, so is it really possible to completely clear the pseudomonas or will she need lung surgery (which she mentioned she may need at some point) ?
The doctor confidently says she won’t remember this section of the Delirium as the infection is so bad . Is that true? She seems there even though she is not responding to commands.
Do you think she can sense me being here? I am getting to the point where I don’t like taking a day off now as I feel she needs me there. But I’m very tired.
How long might it take to get rid of this infection? The doc wouldn’t say but she referred to 3-4 months later in conversation. I’m concerned she’s not getting rehab as the condition is bad they need to lay her flat at any point so won’t sit her up on end of bed . She can’t lay on her sides which is a shame, only a tilt. She used to be up every 20 mins so this must be torture to her. She can’t move anything but her neck.
She’s not getting enough rest and she’s not getting enough activity and this might go on for 3 more months?
The doctor says she will have the delirium whilst she has the infection.
I feel that her human rights are out the window, not allowed to speak or scream, no sleep, no daylight, no movement , no activity other than the music I bring in and all their tests . No food, no drink, nothing. Etc. She really looks like she is suffering and no one really knows what effect the drugs are having (side effects) that she can’t speak of like sickness etc.
The doctor says when she is suffering more than she is getting better then we can have the conversation about withdrawal of treatment. She believes she isn’t currently suffering as she won’t remember it. Do you know cases where it will be remembered? I’m sure I have read of some?
The doctor says; if her body can’t take it then we will listen to it. But the damage done is because of the ventilator. Even though they got her in there saying they will rest her lungs with ECMO, the result is they have damaged her lungs with the ventilator causing holes and an air leak. One of my main concerns is whether her brain can take all of this. Her sanity has always been my concern and I dread to think what psychological effects all this will have not to mention long term effects of the holes in lungs and all the drugs, none of which has been discussed as she says it’s too early to tell.
I really want her to have peace and quiet and have put notices up about noise causing stress, lack of healing and adding to delirium. She has earplugs but they only muffle the sound not block it. I went to PALS today to complain about the phone which rings and rings and needs a volume control as its too loud, and the nurses were gathered by her bed talking loudly about another patient. As I said to them, the only thing she is able to do is hear. She can’t move or speak. But they all just chat away.
She needs sleep to heal and she’s not getting it. Is there anything else I can do?
Also, the lights went out at 11.30pm last night, usually 10pm. Can I ask for them to go out earlier? They take her ear plugs out and lights on at 7pm but she critically ill, she needs as much sleep as she can get. It really frustrates me. I’ve seen your posts about home care but i don’t think that’s an option here?
If you can answer these questions that would be really appreciated!
Many Thanks
Ellie
Hi Ellie,
I hear you clearly and I can see that you are very stressed.
That’s perfectly fine and in such a difficult, frustrating and challenging situation the only thing you are worried about is your Mum.
That’s great and honourable, but you need to take a rest and I will tell you why in a minute.
First of all, take a deep breath and give yourself a pat on your back for coming so far and for being so strong.
Next, take a look at those blog posts here
Does my critically ill loved one in an induced coma or with head injuries feel my presence?
Be more selfish if your loved one is critically ill in Intensive Care
It’ll give you more perspective why it’s so important that you need to look after yourself!
I believe especially with your 8 month old baby, you are currently going through hell and I’m worried that you might get sick and even more tired.
Especially because you are saying that you are tired and you don’t want to leave your mother. I can relate to that and I think it’s now you and your baby who needs to come first.
Your mother will need you one way or another, but you need to stay strong and keep your sanity and the only way to do that is by having a rest and some time out!
It’s a big issue that Families of critically ill Patients feel guilty and they suffer just as much as their loved one by seeing them suffering.
Here is what you need to know:
1) Your mother is in a very difficult situation and she’s very sick, there is no question about it.
2) The doctor is correct to say that it’s still too early to look at a withdrawal of treatment. Whilst I know how awful it is for you to watch your mother in this condition, your mother is too young to give up! 58 is not old, you mother could live for another 30 years!
3) If she does recover she will have a long road to recovery and don’t underestimate how resilient people can be! I have seen this over and over again in Intensive Care and it’s been one of my biggest life lessons that people can be extremely resilient against all odds. For some perspective: You wouldn’t be here today if your ancestors hadn’t been resilient. Your ancestors lived over millions of generations through war, famine and other catastrophes during times when there were no hospitals, no Intensive Care or any of the other luxuries we have today. Put it in perspective and know that you and your Family are resilient. It’s no guarantee, however it’s very important that we all know where we came from!
4) The “holes” in the lungs, which are Pneumothoraxes, are a concern for me and it worries me that after many weeks of having chest drains, those Pneumothoraxes’ have not resolved. I know the Doctor hinted at surgery, but again, just like she mentioned that for a lung transplant your mother needs to be infection free, she also needs to be infection free for surgery. It sounds like the infection is getting better and the drains are a high infection risk in and of itself
5) The Doctor mentioned that your mother is delirious because of the infection. I question that and while the infection may be part of it, I would think it’s a combination of a drug induced delirium rather than an infection induced delirium. Withdrawal from drugs is certainly a part of it after many weeks in an induced coma, otherwise she wouldn’t be on Clonidine 30 Micrograms/ hour(it’s microgram not milligram)- which is a fair amount- but it can be effective for coming out of an induced coma.
6) Fentanyl 50 Micrograms/ hour is a fair amount as well, however with the chest drains still in place your mother will have some pain and as you’ve told me they are trying to take your mother off the Fentanyl at least for a while and that’s good
7) I guess your mother still needs the Lorazepam and Quetiapine(which is an antidepressant) for the delirium and also to deal with potential withdrawal from Midazolam/ Temazepam
8) Can your mother hear you in the situation she’s in? Have a look at this blog post, it’ll give you the answer
Does my critically ill loved one in an induced coma or with head injuries feel my presence?
Most critically ill Patients don’t remember their stay in Intensive Care, they usually only remember “waking up” once they were on the ward. I know how terrible you feel when watching your mother suffer and that’s even more terrible because you know there is no guarantee about the outcome
9) I know you feel like your mother has no human rights, however this is an exceptional and difficult situation and exceptional and difficult situations require different responses and I really think your next step is to remove yourself at least for a couple of days
10) I know you are worried about lights off and peace and quiet at night. You need to know that critically ill Patients have no or little awareness of a day and night rhythm. Yes, sleep is important and sleep can heal people, there is no question about it. The situation your mother is in however demands that the nursing staff give her the same care and attention day or night. They still need to turn your mother regularly to prevent pressure sores and they still need to do regular mouth care, eye care, washes etc.. to prevent any infections there and to keep everything clean. Therefore keeping everything at a minimum at night is probably what they are already trying to do, however it can be difficult. ICU is a 24/7 environment
11) I don’t think the earplugs will be the answer as you can be pretty certain that your mother won’t remember anything. Your mother has far bigger issues to deal with and whilst the devil can be in the detail, I don’t think that earplugs will make or break your mother’s situation
12) Intensive Home care is not an option in the UK only in Australia, check out INTENSIVECAREATHOME.COM.AU for more information
Recommended resources
Ellie this is really about you and your sanity! I know how terrible it must be watching your mother in this situation and you need to zoom out for a while to keep your sanity.
A friend of mine was in ICU two years ago with Legionnaires Pneumonia. He’s in his late fifties, a heavy smoker and we all thought he was going to die. Given the knowledge that I have, I had little hope for him and he miraculously pulled through and he’s so happy to be here. He doesn’t remember anything and he now enjoys a good quality of life.
Whilst there are no guarantees for your mother, at this stage there is not much you can do for your mother besides what you are already doing. What you can and what I even urge you to do is to take some time out and do something nice for you. It’s summer in the UK, I’m sure you have plenty of things to do. Take your mind off things for a couple of days, it’ll do wonders for you!
You need to be strong for whichever way this situation will go.
Once you’ve gotten some rest and once you’ve gotten your strength back then it’s time for you to look at your next steps.
The next steps for you- and only after you’ve had a rest- facing this challenge is to get more composure. Maybe you are doing it already, but in any case take a look at this blog post here
I hope this helps Ellie, take a step back for a couple of days, stay positive and keep up the good work!
Let me know if you get stuck and we can have another chat on Skype!
Sincerely,
Your friend
Patrik Hutzel
How can you have PEACE OF MIND, control, power and influence whilst your loved one is critically ill in Intensive Care?
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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 [email protected] with your questions!
Also check out our Products section where you get more Ebooks, Videos and Audio recordings and where you can also get 1:1 consulting!
This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
Sincerely, your Friend
Patrik Hutzel
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