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 was
You can check out the answer to last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED”, I want to answer another question from one of our readers and the question this week is
My 57 year old Dad has been in Intensive Care with Cardiomyopathy and Pneumonia for 5 weeks! He’s still in an induced coma and still doesn’t have a tracheostomy, HELP! (PART 6)
This series of questions from Garry are excerpts from numerous 1:1 phone and email counselling and consulting sessions with me over a two month period.
Garry and his family went through many challenges while his Dad was in Intensive Care and I felt very privileged helping Garry through this difficult time in his and his Dad’s life!
thank you for following up and reaching out.
Things have been a bit hectic for me, both with my Dad as well as with my job.
I had to go travelling with my job for a week so that took my time away from staying with my Dad.
My Dad is doing well, all things considered. He is still in the same ICU however, and I am finding it very difficult to get anywhere with that. I have reached out to several ICUs asking for help/advice and my messages get left unreturned.
In terms of my Dads progress, he is awake and sedation is very much reduced right down.
Miraculously he has very little confusion / delirium ! – he knows who I am and knows he is in a hospital, when I ask him if he knows what’s happened to him he says yes he does.
However, he is totally unable to speak due to the tracheostomy and is only able to lip yes / no etc. I can see he is very frustrated with that.
This has been a major step forward for me and my Dad, he has been in the ICU 8 weeks now and it’s the first time I have seen him awake and he actually is aware what’s going on now. However, his moments of consciousness are very short and he falls asleep very often.
His muscles are very very weak and atrophied. He can’t lift his arms or legs at all and can only move his head slightly.
He’s only getting minimal Physical therapy/Physiotherapy.
He is also still not able to breathe on his own, when they pause the ventilator his heart rate / blood pressure rises.
In terms of his Heart, he is still on Inotropes(Dobutamine and Noradrenaline). Apart from that, they are doing little else 🙁
What do you think are the next steps if I can’t get him admitted to another ICU?
It would be great if we could schedule another call tomorrow at 12:30pm.
All my best
I’m very glad to hear that your Dad is stabilizing for now and that he even has brief periods of being awake !
Those are the good news for now!
The not so good news is that no other ICU is responding to your calls or should I say pleas?
My view certainly hasn’t changed in terms of your Dad needing to leave this ICU ASAP as they are basically denying him best care and treatment for his severe Cardiomyopathy !
Again Garry, not having a Cardiologist involved in his care and treatment screams negligence to me in a case where severe Cardiomyopathy has been diagnosed.
Furthermore, not doing a tracheostomy for 5 weeks in a situation where there were no signs that your Dad was ready to come off the ventilator any time soon is again highly inappropriate and it’s quite frankly negligent!
Not referring to another ICU early on when your Dad was first diagnosed with Cardiomyopathy, in order to give him the option of ECMO, VAD and/or heart transplant is again a sign that they don’t know what they are doing!
With this referral would have also come an early tracheostomy and your Dad would have benefited greatly from it!
Again, an early tracheostomy would have reduced the amount of sedation your Dad was needing to a bare minimum and would have put less pressure on his already strained body!
What this ICU has done thus far makes no sense whatsoever and your Dad is suffering because of it!
A transfer to another ICU will be even more challenging now for a number of reasons including but not limited to
- the time that has passed by now, I.e. given that after 8 weeks in ICU your Dad is not making any progress it would look extremely bad on this ICU to make a referral out now
- Given that they have done a tracheostomy after only 5 weeks of ventilation it again would be embarrassing for them to admit to another ICU that they left your Dad on the breathing tube for so long
- Moreover, not having a Cardiologist involved despite being diagnosed with severe Cardiomyopathy would be another big blunder in their approach. Another ICU would always ask for a Cardiology review as well
- Furthermore, after 8 weeks in ICU with suboptimal treatment and therapy at best, has again, lowered the chances of being accepted in another ICU as he might be too weak for any advanced form of therapy such as ECMO, VAD and/or heart transplant
It almost sounds to me like this particular ICU isn’t even aware of any other advanced treatment options and they didn’t even know what they should have offered your Dad in the first place.
The good news for now are that sedation has been lowered and therefore your Dad is showing signs of being conscious, at least intermittently.
It’s good that he has an idea of what’s happened and the circumstances he’s in.
Your Dad being being awake and feeling more settled has been unnecessarily delayed by almost three weeks because of not having the tracheostomy early on.
You’re also referring to two things that are rather concerning too, one being that his muscles are atrophied and that he feels very weak.
Again, Garry, I’m not surprised by this at all.
This is unfortunately a result of being in an induced coma for so long unnecessarily because of the delay in tracheostomy.
Again, the purpose of an early tracheostomy is always to get people out of an induced coma and reduce the amount of sedation a critically ill Patient is getting.
It would have made your Dad responsive much earlier and he might have been in a position to get mobilised early.
This would have strengthened his general condition and he might have atrophied lesser and slower.
ICU’s who look after a lot of really sick Patients know this and have experience with it.
ICU’s who have three beds are not getting many sick Patients to look after and they lack the experience and the foresight to manage such a complex situation.
The next step for your Dad- besides going to another ICU- would be to get Physiotherapy/ Physical therapy started ASAP.
This is necessary for two reasons
- Get some strength back and get some movement back, especially since your Dad can’t move his arms or his legs
- To train him to get him off the ventilator and the tracheostomy if possible at all by doing some chest Physiotherapy
Both, movement therapy and chest Physiotherapy require Physiotherapists that have worked in Intensive Care and have some experience with severely debilitated and critically ill Patients.
I doubt that this “ICU” has those skills within their staff.
Given that they’ve missed the boat early by
- Not getting a Cardiologist involved
- By not doing an early tracheostomy
- By not referring your Dad to another more specialized ICU
I very much doubt that they have specialized Physiotherapists with the skills and “know-how” in order to treat your Dad properly.
I know it’s not very encouraging what I have to say, however I think given of what we are seeing right now, your Dad is finally “waking up” which is what could have happened 5 weeks ago.
I’m also not surprised that he’s still on Inotropes(Noradrenaline and Dobutamine) with his weak heart and also with being on sedation until recently.
Your Dad has entered a vicious cycle.
- His heart continuous to be weak with the Cardiomyopathy, therefore he’s needing Inotropes such as Noradrenaline and Dobutamine
- Because your Dad’s heart is weak, he can’t come off the ventilator because a weak heart is not giving his lungs enough oxygen to breathe
- Furthermore, the unnecessary and inappropriate delay in tracheostomy and therefore the delay in coming out of the induced coma has weakened your Dad to the point where he’ll fight an uphill battle to survive this ordeal
Again, Garry he needs to get out of this ICU ASAP!
Therefore, the next steps for you are to keep trying other ICU’s as well as keeping the consultants on their toes to send him to another ICU!
At least they are not talking about a “withdrawal of treatment” anymore, which would be a very hard “sell” anyway given by what you know by now!
We’ll speak tomorrow!
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Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!