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 was
The ICU Team Won’t Give Me A Copy Of My Dad’s CT Brain Scan Report. Should I Challenge The ICU Team And Push For What I Want?
You can check out last week’s question by clicking on the link here.
In this episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my clients Anna as part of my 1:1 consulting and advocacy service! Anna’s
dad is in ICU and Anna is asking how her dad can get off the ventilator and out of ICU to prevent another infection.
How Can We Get our Dad Off the Ventilator and Out of ICU to Prevent Another Infection?
Hi Anna,
It’s great to hear that your Dad is improving neurologically, that’s fantastic news and you should keep looking at the positives and basically “rub it in” the Intensive Care team’s face! Use every little win in your dad’s favor!
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As far as your questions goes, the following applies:
If he was breathing 47 breaths per minutes for a longer period of time they would have to increase PS (=pressure support) from currently 5 to 7, 8 of even 10 to give him more support and reduce his rate of breathing.
The picture could just be a snapshot of an artefact reading of the breaths/minute- which sometimes happens- and he might have been back to <30 breaths per minute 10 seconds after the picture was taken.
That could well be the case especially if your brother took the picture after your Dad was mobilized.
Oxygen levels are just slightly elevated at 35% on the ventilator, I am way more concerned about the breathing rate if it was accurate.
Furthermore, I forgot to mention, it looks like your Dad is in an irregular heart rhythm AF (=Atrial fibrillation) which is no surprise after seven cardiac arrests!
Hi Patrik,
Many thanks for your email yesterday- very helpful as always.
So an update. We arrived at ICU this morning and the neurologist was waiting for us as arranged. One of the ICU consultants joined us too.
The neurologist asked me what I knew about my Dad’s condition over the last few days. I said that I hadn’t seen him myself but that my family reported he was doing better neurologically.
“That’s my assessment too” he said. “I believe your Dad is improving. I think he understands my questions when I come to visit him and that he recognizes me.” It looks as though he has been to visit Dad a few times – why they didn’t tell us this we’ll never know Patrik!
His working diagnosis is critical care myopathy. He said he feels Dad’s ability to move his face and upper body is good. He said nerve rehabilitation will also aid respiratory function?
The rest of his body is improving – he can now move his legs on command and spontaneously. Not strongly of course, but the connection is there.
He has scheduled a nerve conduction study for Sunday.
He said his plan is for Dad to be weaned off the ventilator so that he could be moved to his ward for neuro rehab. He said they can deal with tracheostomies and oxygen support fine there, but not ventilators.
He said “can I promise a 100% cognitive recovery? No, I can’t ever make promises, but I’m hopeful of a very good level of recovery.”
He said: “What your Dad needs is time and specialist support”
I was stunned. All my questions went out the window.
The ICU consultant agreed. Dad did 5 hours off the ventilator today. He said it’s a slow process but that he is cautiously optimistic that Dad could get off the ventilator. His chest x-ray does show some improvement.
However, he did say “look, I feel constantly as an ICU professional that I’m sitting on a risk Re: your Dad getting another infection. We really need to get him off the ventilator and ideally out of ICU in terms of infection exposure”.
Dad’s infection markers are starting to climb again – they are 140. They don’t know why. But he said they are monitoring it very carefully. “I don’t want to give him antibiotics blindly, as his gut flora will have been completely disrupted by many weeks of antibiotics, plus I don’t want to put him at risk of resistance. But we’ll keep growing all the cultures and act as soon as we need to, so we’ll be on top of it” – again the big advantage of being in ICU
right?
Dad had his pacemaker fitted internally yesterday.
I asked his nurse what medications he is on:
- Metformin for his diabetes
The sleeping tablet prescribed is Zopiclone – I think that’s how I heard her pronounce it?
The ICU consultant said he has tweaked the settings on the ventilator to give Dad a complete rest overnight. “We need him really well rested every night for the physio and time off the ventilator each day”.
I took a picture of the screens for you tonight before I left at 8pm:
Physio are going to try putting a speaking valve on his tracheostomy tomorrow.
I didn’t get a chance to ask the ICU consultant whether restoring gut flora, or the use of probiotic therapy via his nutritional feeds, is possible or advantageous for ICU patients?
I think that’s everything from today!!!
Best wishes and many thanks as ever,
Anna
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Hi Anna,
How is your Dad doing?
Any improvement?
Kind regards,
Patrik
Hi Patrik,
Very kind of you to email me.
Well, my family report that Dad has been doing better. They’ve been doing good physio – the physio team mobilized him as usual and got him to stand for a minute I believe – and my brother feels it’s definitely helping; Dad can squeeze a hand on request, move his legs and get, answer questions with a nod or a shake of the head.
My brother asked him are you comfortable? Nod.
Are you ok with the ventilator? Nod.
Are you feeling tired? Shake of head.
Are you feeling a bit achy from the physio? Nod.
The physio team are gradually trying the speaker valve – apparently Dad made a good first attempt. They are dynamic; I really rate them.
They have brought a television in for him to watch Wimbledon/World Cup which he has seemed to enjoy. My brother says he seems to be focusing his eyes better.
They’ve been maintaining his time off the ventilator.
You may remember the ICU consultant said dad’s infection markers were on the rise again? Well they stabilized so they didn’t do anything, but as of yesterday they started to elevate again so have started a course of antibiotics. They told my brother it’s precautionary, and that they hope as he is stronger he can fight this off. None of the samples/cultures come back with anything, so I assume they are using a broad spectrum antibiotic again.
It does worry me Patrik, I have to be honest. I worry that this will be the pattern going forward. As you say it’s critical to get Dad off the ventilator and ultimately out of ICU and into neuro rehab. I really hope he can do it.
However, on the plus side Dad is clearly stronger physically and better neurologically than he was a week ago.
I plan to drive down to there on Saturday eve, and spend Sunday and Monday with my dad. (As you know I live very far with my husband and two small children. In an ideal world I’d like to be there every day, keeping on top of his care.)
Can I purchase an email package with you, Patrik?
I think I will definitely have questions going forward, particularly after my weekend visit, and I’d very much welcome your advice and help as always.
Best wishes,
Anna
Hello Patrik,
My stepmom went in to see Dad today and the physios were with him. They were practicing the speaker valve again: Dad told her “I love you” and obeyed all the questions to lift his legs etc. He seemed to really understand. I don’t know how this sits with the ICU consultant’s comments on dad’s neurological status yesterday.
Patrik: Don’t worry about the ICU consultant’s comment and go by what your Dad is doing and how he’s responding! He’s talking making sense, moving, expressing emotion etc. Those are not the signs of a dying person.
My sister is unhappy with the disparity in communication with us; she feels it’s unacceptable.
Patrik: It is unacceptable, but it’s also what often happens. Your strength will come from questioning everything and being your Dad’s advocate and look at where he’s come from and how far he’s made it from nearly dying 7 times!
One of your challenges at the moment is that you’re too focused on the future. This always creates friction because we are unable to predict the future with certainty. Try and stay in the moment, take one day at the time and look at the situation from a different angle.
“If you change the way you look at things the things you look at change”.
What do I mean by that?
Your goal is to get your Dad live one day after another and look at the small steps he’s taking. Make sure he stays alive and he’s taking small steps towards improvement. The longer he’s alive and the more improvements he’s making the odds are increasing he will stay alive and get out of ICU alive!
Keep focusing only on the positives and not on the negatives! Be persistent! It’s a marathon and not a sprint!
If you want to change consultants I would do if I was you, I think your line of argument should be that you don’t want any negativity around your Dad!
What I don’t quite understand is where the neurologist is? Is he or she still in the picture? Their views will still be needed going forward
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Dear Anna,
Thank you again for being a client, I highly appreciate it!
First off, reading through your emails over the last couple of days, I don’t think much has changed with your Dad’s neurology from when we last spoke. If he’s poking out his tongue and is obeying commands at least intermittently, he will be a GCS 11-
which is the maximum score for somebody on a ventilator with a tracheostomy who is unable to talk.
If he has the speaking valve and he can talk and he’s oriented and makes sense, as well as obeying commands he will be a GCS 15, the maximum score for anyone person who is compos mentis.
As far as the negativity goes from the Intensive Care team, please ignore.
The fact of the matter is that your Dad has gone a long way and given that he survived seven cardiac arrests is a miracle in and of itself and it shows his strength, tenacity and will to live! As I mentioned in the past, I cannot recall ever in nearly 20 years in ICU having seen anyone survive 3 or 4 cardiac arrests. This speaks loudly and you should rub it in to the ICU team’s face that this is the type of man your father is, that he can’t be beaten.
The negativity is not going to help anyone but the ICU team’s agenda which is to empty their ICU bed as quickly as possible because it blocks a bed costs them around 3,000 Pounds per bed day. ICU’s know what’s happening inside of ICU not what your Dad’s life might look like outside of ICU if he gets to that point.
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Also, if your Dad is more awake and can respond, now might be the time to ask him what he wants!
You’re saying the tone was ‘cautiously optimistic’ last week and now it has changed and again I’m not surprised by it because the ICU team is very concerned to “look after your Dad indefinitely with an uncertain outcome!” That’s an ICU’s worst case scenario and your Dad is in the midst of it!
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Approach everything from that angle that your Dad is “the ICU’s worst case scenario” and they are trying to manage it. They also know by now that you are not giving up, which is another added “worst case scenario” for the ICU. You should take all of that as a compliment by the way!
Please also look at the comments in red below and I will send another email in a few hours to elaborate on the rest of the questions.
Please also send through a picture of the ventilator and the monitor if you can and I will make some comments there too!
Kind regards,
Patrik
