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 “My 84 year old, previously active father is on a ventilator and the dialysis machine in Intensive Care, will his kidneys ever recover?”
You can check out the answer to last week’s question here.
In this week’s episode of “YOUR QUESTIONS ANSWERED” I answer another question from one of our readers and the question this week is
My Dad is in ICU after a subdural haematoma, he’s had multiple surgeries and he’s not waking up! Help!”(PART 1)
Laura from Ireland writes
Thanks for all the information you provide on your blog and through your emails.
My dad is 64 and was admitted to hospital 6 weeks ago today on Friday 21st March. He had a Subdural haematoma (left and right side) which required minor surgery of 4 burr holes to drain the fluid.
However the following day, Saturday, the fluid on the right side was running pink so they knew the bleed was continuing so decided to make a bigger opening on right side to take a better look. There were some surface tethered veins which the surgeon corrected and replaced the bone.
My dad was very uncomfortable and slurring on the Saturday night and Sunday and we knew something wasn’t right. On Monday morning he was difficult to wake and the ICU nurse spotted that his right pupil was much larger than the left. They decided to perform a craniotomy on the right side to relieve pressure and see what was happening. It turned out the bleed had reoccurred but was mopped up and the bone flap replaced.
By the Wednesday the pressure was not subsiding so they decided to do a 4th surgery to extend the craniotomy and remove the bone flap completely.
The neurosurgeon was happy with how all the operations went and explained he expected the midline shift that had occurred to correct itself now that there was a significant bone removal from the skull.
My dad was put in an induced coma. During this time they had some problems regulating his temperature and he was making some jerking arm movements which they treated with anti seizure medication as a precaution. (Although the neurosurgeon didn’t think they were seizures) He also had a chest infection with was treated with some very strong antibiotics.
After 2 weeks the neurosurgeon decided to take my dad out of the induced coma as after all the problems my dad was now stable, but it is now 4 weeks later and my dad still hasn’t woken up.
All his vitals and other organs are absolutely perfect and even though he has a Tracheostomy to protect his airway he is off the ventilator and breathing on his own. He had a CAT scan and MRI and neither show any reason why my dad isn’t waking up although there appears to be some swelling of the brain stem which the neurosurgeon can’t understand as all the operations were surface brain and performed very quickly when each problem arose. Also the correction of the midline shift is happening slower than expected.
My dad’s eyes are closed however we can see his blink behind his eyelids. He also responds to pain although they are saying its in a very primitive way. His heart rate and breathing change when we are in the room (even the head of ICU acknowledged this as the nurses had reported it to him).
The Intensive Care team is all “doom and gloom” but we as a Family stay positive
Our problem is that the head of ICU and a couple of the ICU nurses are giving a very poor prognosis and are saying my dad may not wake up at all. As a family we are remaining positive and spend each day in the hospital talking to dad and putting on his favourite music and tv shows.
We are hoping dad will be moved to a private room on a high dependency ward in the next week once the hospital can figure out how to provide his care outside the ICU setting. We live in Ireland where facilities are not very readily available for brain injury/trauma.
I was looking for your advice on this case as the hospital have never experienced 4 brain surgeries in less than one week and seem to be comparing my dad’s case to people who have just had one surgery. The amount of surgeries would appear to be traumatic in itself?
Also, I was wondering if you have any advice on how we can further stimulate dad in the hope that this will rouse him from coma, they are saying the longer the coma continues the less chance of recovery.
Just another thing I forgot to mention, my dad’s blood results came back this week and it turns out he has Factor 13 blood deficiency, which is very rare and explains why the bleed didn’t stop after the surgeries.
I am sorry for the length of this email however I wanted to give you a full picture of my dad’s situation.
I appreciate you taking the time to read this and would really like to hear your views.
Thank you for your email.
I’m really sorry for the situation that you, your Family and your Dad are in. It’s a terrible situation to be in and it’s also very often a “ONCE IN A LIFETIME” situation and you want to seek the right type of advice in those situations!
You’ve given me enough information so that I can shed some light on your situation.
You see, the first thing that stands out for me is that your Dad has had four surgeries on his brain in one week. That’s massive and you are pointing out correctly that the hospital would find it difficult to compare your Dad’s case to any other case, because they just have never experienced this before!
I can tell you that even in big metropolitan Intensive Care Units with big trauma Intensive Care Units they wouldn’t see many Patients having four brain surgeries in a month, so therefore you are thinking in the right context that your Dad’s situation appears to be exceptional, given the number of (brain) surgeries he went through within a very short period of time.
Therefore it seems to be nothing unusual from my experience, that the CT and MRI both show a normal brain after the surgery that shouldn’t stop your father from “waking up”.
You have also mentioned your Dad’s Factor 13 blood deficiency. It’s not quite clear to me whether this was known before admission to hospital or whether it was only diagnosed during his current hospital stay?
Higher risk of bleeding with Factor 13 deficiency
Either way, your Dad would have been at a higher risk for a bleed to occur at any given time with the Factor 13 deficiency and it would explain why the bleed reoccurred after the first surgery, however with head and brain injuries, I have always seen some Patients with re-occurrence of bleeding. Not a huge amount, but there are always some Patients who re-bleed.
Normally what happens in brain and head injuries is that Patients don’t have anticoagulation(blood thinning) medicine after their surgery- which is different compared to other types of surgery, because those Patients always get anticoagulation medicine to prevent deep vein thrombosis- however in head and brain injuries normally no anticoagulation is given, due to the fact that the risk of a bleed in the brain needs to be avoided at any cost.
Normally, an induced coma after head or brain injuries is done to protect the brain and to give the brain time to recover and especially with the midline shift, the induced coma is also “buying” time for a midline shift to resolve.
CT’s and MRI’s may look normal and Patients still don’t “wake up”
You didn’t mention any abnormalities in the latest CT/MRI scans, therefore your Dad should “wake up” according to those pictures. However this is what happens right across the board with head or brain injuries that CT’s or MRI’s look “normal” and Patients still don’t “wake up”.
And here lies the crux of the issue and I can tell you that in more than 15 years of Intensive Care nursing in three different countries, the biggest difference in some Patients “waking up” and others who don’t is time.
Imagine, a brain that has been operated on four times in less than one week has undergone massive trauma and it therefore takes time.
The biggest difference is often the culture within Intensive Care and the time given to Patients
I can tell you that the biggest difference I have seen in Patients who recover from severe head and brain injuries are the ones who are given time, patience and nurturing.
Once out of Intensive Care, special rehabilitation for brain injuries might be next.
- THE 10 THINGS YOU DIDN’T KNOW ABOUT SEVERE HEAD OR BRAIN INJURIES (INCLUDING TRAUMATIC BRAIN INJURY AND STROKE) IN INTENSIVE CARE THAT YOU MUST KNOW, ESPECIALLY IF YOUR CRITICALLY ILL LOVED ONE ISN’T WAKING UP!
It doesn’t surprise me that the head of the ICU and even some of the nurses paint a “doom and gloom” picture. The head of the ICU, even though he won’t admit it, wants the ICU bed available, because especially if your Dad has been in ICU for six weeks now, they are counting the numbers.
You should ask the Intensive Care team how long they would expect it takes for your Dad to “wake up” and you should also ask how long they are prepared to look after him.
Patience, nurturing, time, positivity and a “can-do” attitude are important ingredients
I have worked in some ICU’s where we had head or brain injuries for months and we nursed them with patience and from my perspective it made all the difference. Patients recovered. It took a long time, yes, but with ongoing stimulation, patience, nurturing, positivity and a strong believe that it’s doable. Those Intensive Care Units had a vastly different philosophy and culture compared to other Intensive Care Units.
This is not the ultimate recipe for a successful recovery but it tends to have all the ingredients.
Don’t buy into the “doom and gloom” and follow your gut feeling
Some other Intensive Care Units that I worked in had a very negative culture about head and brain injuries and when the earliest sign appeared that a Patient may not “wake up” the Intensive Care teams have been very quick in painting a “doom and gloom” picture, because they simply don’t want to spend the time, the energy and the resources that it takes to get Patients and their Families through this difficult and emotional roller coaster. Those Intensive Care teams tend to be very good at “selling” a “withdrawal of treatment” and/or a “limitation of treatment” as being “in the best interest” of their critically ill loved one to the Families of those Patients.
- THE 5 THINGS YOU NEED TO KNOW IF THE MEDICAL TEAM IN INTENSIVE CARE WANTS TO “LIMIT TREATMENT”, WANTS TO “WITHDRAW TREATMENT” OR “WITHDRAW LIFE SUPPORT” OR WANTS TO ISSUE A “DNR” (DO NOT RESUSCITATE) OR AN “NFR” (NOT FOR RESUSCITATION) ORDER FOR YOUR CRITICALLY ILL LOVED ONE!
- PEACE OF MIND, CONTROL, POWER AND INFLUENCE EVEN IN THE MOST CHALLENGING OF CIRCUMSTANCES THAT YOU, YOUR FAMILY AND YOUR CRITICALLY ILL LOVED ONE COULD POSSIBLY FACE IN INTENSIVE CARE!
- FOLLOW THIS PROVEN 6 STEP PROCESS, ON HOW TO BE POWERFUL, IN CONTROL, INFLUENTIAL AND HAVE PEACE OF MIND, IF YOUR LOVED ONE IS A LONG-TERM PATIENT IN INTENSIVE CARE OR IS FACING TREATMENT LIMITATIONS IN INTENSIVE CARE!
It’s also often not perceived as “sexy” by the Intensive Care team to continue treating Patients that don’t require the latest technology or where they can’t do the latest research and so on.
- What the doctors and the nurses behaviour in Intensive Care is telling you about the culture in a unit
- Is it “SEXY” for the Intensive Care team to treat your loved one who requires a long-term stay in Intensive Care?
- How long does it take to wake up from a Traumatic brain injury or severe head injury?
- Does my critically ill loved one in an induced coma or with head injuries feel my presence?
- How long will my critically ill loved one in an induced coma for after a brain or head injury?
- How long can someone stay in an induced coma?
- How LONG does it take to WAKE UP after an induced coma?
- How long can you keep a critically ill Patient in Intensive Care in an induced coma?
Something else that I can see is the difference in the perception from the neurosurgeon and the Intensive Care team. Generally speaking the neurosurgeon would never tell you that the surgery performed would be unsuccessful. And the neurosurgery team would probably like to have your Dad in Intensive Care for a long time to come until he can recover, however they also know about the resource constraints and the pressures in Intensive care for beds.
Therefore there often is a difference in perception about prognosis form the Intensive Care team’s and from the neurosurgeon’s perspective. If you have read my “INSTANT IMPACT” report you would have discovered the difference in perception from different medical teams there.
Stimulation and good nursing care can make all the difference!
Furthermore and that is another big “take away” from my perspective. Even though CT’s and MRI’s are giving us a lot more insights about the brain nowadays, even the neurosurgeons or the neurologists don’t know enough about the brain and therefore their prognosis remains vague as well. The brain has a life on its own and I really think that time will be the answer to your and your Dad’s dilemma.
You are also asking what you can do to stimulate your Dad further?
Some simple but practical steps
- Having good nursing care with a routine such as brushing teeth regularly, having regular showers and regular and good night sleep
- Getting your Dad mobilised and out of bed regularly at least twice a day
- Getting your Dad in a room with some natural daylight
- Getting your Dad outside regularly
- Having regular and experienced nursing staff looking after him
Those things need to occur regularly though and you may have to keep asking for those things if they are not happening. Don’t take “NO” for an answer!
Also, has a Neurologist been involved in order to do further testing such as performing an EEG
An EEG can determine brain activity and can also shed more light on future prognosis!
From my experience Intensive Home Care is the best option!
Also, have you thought about getting your Dad home? I don’t know the situation in Ireland, however for example in Australia, Germany, Austria, Switzerland and in the US, Intensive Home Care nursing is an option for Patients with Tracheostomies and being in a home care environment can make all the difference. Check out INTENSIVECAREATHOME.COM.AU for more information.
I have worked in the community with Tracheostomy and/or ventilated Patients as well and I believe it’s the best option, however it depends on service availability of course. Home Care is often a win-win situation, because Patients and Families are in an environment where they want to be and it tends to be more cost effective and it frees up the much needed Intensive Care bed.
Don’t get too caught up in “experts opinions” and listen to your deepest source of wisdom
Finally, listen to your gut feeling. Irrespective of what the Intensive Care team and the neurosurgeons are telling you, what do you and your Family deep down think is going to happen? What do you and your Family deep down know about your Dad? Will he recover, will he not recover?
Families of critically ill Patients often get caught up by the Intensive Care team’s “expert opinion” and in the process they forget one of their deepest sources of wisdom which is their gut feeling and the knowledge they have about their loved one.
Because if you give too much weight to the Intensive Care team’s “expert opinion” you would have given away your power, control, influence and Peace of mind straight away…
I hope this helps Laura and please let me know if you have anymore questions.
I wish you all the best, strength, faith and good luck in your challenging situation!
Sincerely, your friend
Also check out PART 2 of Laura’s question here by clicking on the link
I have also interviewed Laura and here is a link to the interview with her
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 “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
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- 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 episode of “YOUR QUESTIONS ANSWERED” and I’ll see you again in another update next week!
This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
Sincerely, your Friend