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 one of my clients and the question in the last episode was
You can check out last weeks question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED“, I want to continue answering the next questions regarding James’ and Christine’s Dad in ICU who’s had a haemorrhagic stroke.
James’ and Christine’s Dad had a brain decompression where they evacuated a large bleed from his brain after the haemorrhagic stroke. And their Dad also underwent a craniectomy (partial removal of skull) to decrease the brain pressures after the bleed.
James’ and his sister Christine were getting their Dad in one of the best hospitals in the USA, the Cleveland clinic in Ohio.
He also had ongoing seizures due to the stroke and his anti-seizure medications needed to be optimized so he could “wake up” and progress to Neurology Rehabilitation.
In today’s 1:1 consulting and advocacy sessions with James and his sister Christine, we look at some setbacks their Dad is going through.
He had to be put back on the ventilator due to a Pneumonia and he also ended up with a central line (CVC) and arterial line again.
In the meantime he has come off the ventilator but still has the tracheostomy after over 5 weeks in ICU.
This series of 1:1 consulting and advocacy is a real testimony for getting advice, run with it and get results.
If you want to avoid LTAC and a nursing home for your loved one, you need to read all of the consulting and advocacy sessions with James and Christine!
So in today’s episode of “YOUR QUESTIONS ANSWERED”, I answer a series of questions from James and his sister Christine again that are excerpts from various 1:1 phone/email consulting and advocacy session with me and the topic this week as part of this series of 1:1 consulting and advocacy session with me and the topic this week is
Dad has left ICU and is in step down, now they try and push us out to a nursing home instead of Neuro Rehab! Help!
You can also read or watch previous episodes of 1:1 consulting and advocacy with James and his sister Christine here
We really need your guidance.
My father has now been moved to step down where he has been for 3 days.
His status is about the same. However, he did have a minor sub clinical seizure for 5 minutes this past Monday so the Dr. did add Zonisamide – 100 mgs every 12 hrs, in addition to Keppra 3500 mgs/day and Dilantin 100mgs 3/day.
Our dilemma is now, even though, my father has been weaned off the ventilator the physical rehab Dr. is saying that my father is not capable of doing 3 hours of acute therapy and therefore still needs to go back to the LTAC (Long-term acute care) where he can progress until he is ready for therapy.
If we bring him back home he most likely will have to go to nursing home.
We are waiting to speak to the case worker and we do not know when his discharge will be.
In addition, he still needs a cranioplasty and we would like to take his tracheostomy out at some point before bringing him home (I don’t even know if they do that at the LTAC.)
We were hoping that he would go right from step down to the acute rehab where he could stay for a few weeks and build up his stamina. At that time, we were hoping they would do cranioplasty and then we could take him to the next phase.
Please let us know your thoughts as we are all very confused on what is the right thing to do!
James & Christine
Hi James & Christine,
Nice to talk to you again, today.
It’s going to be challenging taking the next steps whilst also making sure they are the right steps
- I do believe skilled nursing facility is not the right approach and is worse than LTAC. I was working with a client in Detroit recently and they were given the option for their Dad to go to either LTAC (Long-term acute care) or skilled nursing and even though I’m by no means an advocate for LTAC, it is the better option compared to a skilled nursing facility
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- The minute your Dad has the tracheostomy removed he shouldn’t need LTAC at all, therefore downsizing the trachea is a good thing and then they should be doing the swallowing assessment
- I’m still advocating for Neuro rehabilitation if he meets the criteria. Your Dad has single organ failure(the brain) and one way to improve his situation is the Neurology rehabilitation
- Find out from the Neuro surgeon and the neurologist if they are considering Neuro rehabilitation, what’s the criteria for Neuro rehab and is he meeting the criteria? If he doesn’t meet the criteria, can they help him to meet it eventually?
- You may consider getting him to Buffalo and have him in the hands of doctors that are cooperative and know him whilst being close to family
- Speak to insurance and find out what he is entitled to
- As far as the Zonisamide, Keppra, Dilantin and now Seroquel/Quetiapine is concerned, yes it needs review as you want your Dad seizure free on the one hand, but also more awake on the other hand. Being “drugged up” will increase the chances of ending up in a nursing home rather than trying to work on his cognition and physiological functionality
- I am unable to advise on the Cranioplasty, as I mentioned I have not seen Patients coming back to ICU after a Cranioplasty, therefore the Neurosurgeon should be guiding you
- Your Dad has improved pretty well and also quickly in the last couple of weeks, therefore don’t be too discouraged if he’s now stalling. Two steps forward one step back. Coming back from a stroke can take a long time, the most important thing is to maximize his chances of recovery in the right facility at the right time. It’s a big achievement coming off the ventilator and leaving ICU, he’s overcome those challenges pretty well, therefore keep looking at some of the positives as well!
I hope that helps for now, please contact me if you need more help. I am available over the weekend!
thank you as always for the excellent guidance!
It has been a pleasure working with you. There are so many different variables to this it is almost necessary to have someone leave them out for you in order just as you have done.
You have been a tremendous help and you are a large part of the reason why our father made it this far.
Thank you James and Christine for your kind words.
It’s been a pleasure working with you too and I will help guide you as long as it’s within my area of expertise.
we are still going back-and-forth with the hospital regarding rehabilitation facilities and what to do next with my father.
The neurosurgeon PA said that it was best for my father to go to LTAC this afternoon.
One hour later the seizure team came in and said they are going to wean my father off of 3500 mgs of Keppra starting at 500 mg per day and leave him on the Dilantin and the other medication.
They wanted to take the EEG off of his head on Friday And now they want to leave it on.
I believe they think the Keppra is making him agitated and angry!
I don’t know what to think at this point. We get a lot of conflicting messages.
I wanted to get your thoughts on all of this.
It would be ideal in fact if they were able to wean him off of his seizure medication and get him to rehab and allow him more time to recover so I guess this is not necessarily a bad thing
Please email your thoughts.
sometimes when Patients leave Intensive Care there can be more confusion about who is the primary care team and who is making decisions.
In ICU it’s usually the ICU team making decision in consultation with other specialist teams but at the end of the day ICU is making the decisions. When Patients leave ICU it can get more blurred who is actually in charge of the decisions and ultimately of care and treatment.
I think that this is what’s happening currently, nobody wanting to make major decisions and no one in charge to move things forward, especially when it comes to hospital discharge.
If they can reduce Keppra and keep him seizure free, I think that would be ideal.
You know my thoughts about LTAC…
I do believe still keeping him in hospital and trying to reduce Keppra whilst also monitoring his EEG for any seizure activity is the best way forward especially in light of the fact that they still don’t really have a plan in what to do next.
If he remains seizure free whilst being weaned off the Keppra, it’ll increase his chances to take the next steps, I.e. Neuro rehabilitation. The less medications and the more coherent your Dad is, the higher his chances to get to the right place.
It sounds to me like buying time in hospital is a good strategy for now. As long as you haven’t heard from your Dad running out of insurance I would keep him in hospital for now.
Also, in the bigger scheme of things, now that they and you know he can breathe independently and the “only” issue is seizure management, the focus is getting more narrowed which I think is a good thing as there are less complex issues to deal with compared to a few weeks back.
Before he goes somewhere else either LTAC or even Neuro rehab it is advantageous having all medications as well as care and treatment optimized. Please also make sure they continue to do Physical therapy etc…
If you can keep working with the people who try to manage his seizures so that he can then take the next step I think that be advantageous in the bigger scheme of things.
I hope this helps.
Thank you Patrik.
I would assume his attending physician who is his neurosurgeon is the one that should be making the decisions however he is very rarely in the hospital.
His PA is the one that insisted that we leave the hospital this afternoon until I offered to self-pay because he was not well enough to go to rehab.
Now we have the seizure team trying to take him off Keppra.
You are correct it appears as though no one is taking the lead and everyone is passing the buck.
I agree we will accept the help while we can get it.
Please let me know your thoughts on the above and please let me know your thoughts on reducing the Keppra to zero and leaving him on Dilantin and the other seizure medication that begins with a Z.
I thought that Dilantin was toxic and needed to be monitored in the blood?
It appears as though this is our team could keep the trial and error going for a very long time. Perhaps we will be better off appealing to them?!
What are your thoughts?
I wouldn’t worry too much what the Neuro surgeon’s PA has to say. Unless they are really forcing you to leave the hospital- which I think is unlikely as they have a duty of care- I would just turn a blind eye for now.
Unless you have heard from the insurance that he’s running out of entitlements/funding I would just go with the flow and take the help in hospital and wean him off the Keppra.
Yes, Dilantin needs to be monitored in the blood regularly. If your Dad can stay seizure free on fewer meds all the better. The place to optimize his meds in your Dad’s situation is in hospital in my mind.
Yes, the decision maker should be the Neuro surgeon and/or a Neurologist.
Yes, minimize trial and error, however as I mentioned before, the brain has a life of its own and recovery as well meds optimization could take time. At this stage it also helps to look at how far your Dad has come in recent weeks. He’s probably still only at the beginning of a long recovery road.
Definitely appeal to them if you think there is too much trial and error but they need to probably experiment a little to see if he’s improving or not when changing meds.
I hope that helps.
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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