Russ and I have been working through a significant set of health challenges these past few months, and we have struggled with whether or not to write about them. It is very personal. In talking about it we recognized that there is healing power in the telling of the story, and a chance that someone else might be helped from knowing our experience.
This Thanksgiving, we were excited to be traveling to spend the holiday with our niece and her daughter. We had a number of errands and things to do in preparation. On Tuesday, 11/21/17 I left for work after our normal morning routine, all was well. Russ is retired, so the bulk of our to do list rested on him.
Upon arriving home from work that evening, I found Russ in bed, deeply asleep.
Me: C’mon babe, we’ve got things to do, let’s get moving
Russ: A tired babble
Me: Russ, are you OK? What’s wrong?
Russ: (not enunciating clearly or completely making sense, but eventually conveying his thought) I didn’t feel right so I came back to bed
That’s when I noticed his coffee and morning protein shake on the nightstand, both untouched, and put together that he had been in bed all day.
Me: Babe, what’s going on? Tell me what hurts
Russ: (not enunciating clearly or completely making sense, but eventually conveying his thought) I was at the computer, my right side went numb, now I can’t move my legs
Me: I’m calling 911
Russ: (not enunciating clearly or completely making sense, but eventually conveying his thought) I was going to call, but the doors are locked and I didn’t know how I would get downstairs
Me: Babe! Look at me. Can you raise your arms above your head? Smile at me! Talk to me, what hurts?
I knew he was not OK, but given a moment, he could reason his way through the actions and the questions. Puzzling, and also clearly something that needed to be investigated by medical professionals.
The Fire Department arrived in 5 minutes, Medic shortly thereafter. He did OK responding to their questions. His blood pressure was high, and he had a fever. Off to the hospital in an ambulance he went with me following in my car.
Test after test ensued. Due to the fever, the ER docs were thinking meningitis or some other type of fast moving infection. Meanwhile Russ was sleeping more and more deeply and not always responding to questions or physical stimulus.
The results of his CT scan came back, and our lives changed.
The CT scan showed a brain hemorrhage, and a large tumor. Within moments inside a whirlwind of activity I was speaking to a neurosurgeon who told me he had to drill a hole in Russ’ head immediately to relieve the pressure from the blood that had gathered in his brain. After asking him a myriad of questions, including how many times have you done this, I agreed, signed the consent and then cried, hugged and stroked my husband’s head while he was being prepped for this procedure to be done in the ER. I walked out of the trauma room stunned and went outside for a few moments. Most of it was deep breathing and shaking my head to try and keep it clear, and some of it included a thought process along the lines of are you effing kidding me? Really, I mean really? A future blog will explain the depth and meaning of that particular part of the reaction in more detail, but suffice it to say what the melt down lacked in duration it made up for in intensity. I was momentarily bewildered, suspended in a dream world, lost, royally pissed off, and completely terrified. Sailors ain’t got nothing on me. It was absolutely fucking surreal. And then it wasn’t.
I pulled it together quickly and I knew I had to walk back in that ER and bring my A game, become educated, and advocate for Russ like nobody’s business. I went from crushed and cowering to believing with every fiber of my being that Russ and I still had a story to live and memories to make. This much I knew. The drain in his head safely inserted and doing its job, we headed up to the Neurological Intensive Care Unit to begin our fight.
The next days both lasted forever and passed in an instant.
In the initial overnight hours after admission, Russ got progressively worse. He was not in a coma but was profoundly asleep, marginally responsive to questions and stimulus only sporadically, but enough to know he was still in there and fighting. The ICU nurse said it might be due in part to an anti-seizure medication they gave him once he arrived in the ICU. I was not allowed in the ICU until they had him in his room and settled, which was more than 90 minutes, so I was not aware he was given additional medications. She said this particular medication can make you drowsy. Upon hearing this I asked her to list off the meds he was given. There were a whole host of prophylactic medications, most of which I understood their purpose. Seizures are a very real possibility when the brain and head are irritated and in the midst of trauma, but it didn’t make sense to me to give him a medication that would make him drowsy when we were trying to assess how he was doing cognitively. We were waking him up asking him questions and testing him physically, and he was getting worse, more asleep and less responsive, with every passing hour. How can you assess brain function, or loss thereof, in a patient who is drowsy from medication? I asked for him to be taken off the medication, and after discussing Russ’ particular situation, the doctor agreed.
It’s important to ask questions and be involved. It is OK for you to be informed about every aspect of your loved one’s care. Russ received, and continues to receive impeccable care. But physicians are just like any other profession; just because you went to school and obtained your degree and training, doesn’t necessarily make you good at what you do. Greatness comes from knowledge, experience, character, training, watching and learning from mentors and teachers, how you were raised, who you surround yourself with, your attitude, tenacity, curiosity, how you treat others, and many other factors. Everyone has the capability to achieve greatness, your chosen field doesn’t make you great. Yes, becoming a doctor is a lengthy learning process and more difficult to obtain than many other chosen fields of study. Since medicine is seemingly so beyond the capabilities of us non-medical people, we tend to think of doctors as all-knowing Gods. Well, just like those of us who are not in the medical field, doctors have crappy days too, they don’t get enough sleep sometimes just like us, and they make mistakes too. No one made an error in giving Russ the anti-seizure medication, but once questioned and thought about more specifically weighing Russ’ particular factors, everyone agreed it would be a reasonable risk to take in not giving him the anti-seizure meds. Had I not asked what he was given and had I not questioned whether or not if that was the right call given his status, he would have continued to receive medication that made him drowsy when one of his core issues was blood in and around his brain stem, which is why he wasn’t really waking up or responding as he should. It didn’t necessarily take us longer to figure out the details because of this one thing, but it might have. When you are advocating, please do not be afraid to ask and keep asking questions until you understand.
We are still on Day 1.
There was no shortage of physicians coming by to check on Russ. The team of neurosurgeons came in late morning, spent some time explaining more about Russ particular situation to me, importantly including that the tumor was 95% likely to be a benign brain tumor called a meningioma. Honestly, they explained that the tumor was not at the forefront of our immediate concerns, we were full court press on the hemorrhage and the resulting residual blood and after effects. While watching over him and waiting, I researched meningiomas, and calmed down recognizing that the tumor would need to be removed due to it's size, but comfortable in that we didn't need to talk about it now. With every passing moment, I was realizing we were months away from that discussion.
Russ was responding more in the afternoon, following verbal commands, squeezing hands, wiggling his feet and making the thumbs up sign, but he wasn’t speaking or opening his eyes. So, he was coming around ever so slowly, but it was not fast as we had hoped. The drain in his head was working, we could see blood coming out along with cerebrospinal fluid (there was a bag attached to a stand next to his bed where we could watch his progress), but he wasn’t exiting enough of the blood on his own steam. Getting as much blood out of his head as quickly as possible was critical.
The doctors recommended, and after much discussion and explanation, I agreed to give him tissue plasminogen activator, or tPA, commonly known as the “anti-stroke drug.” This is the drug where if given within three hours it can help reverse the effects of an ischemic stroke. Russ did not have an ischemic stroke, he had a hemorrhagic stroke, and they are very different types of stroke, so using tPA in his case would not reverse damage. It would be used to assist in breaking up the blood clots. It is basically an incredibly strong blood thinner. There were definitive risks involved, but after discussing with the neurosurgeon, I agreed that the benefits outweighed the risks. The tPA is administered three times, once every eight hours, and then a CT scan is performed to check progress. The drug was placed directly into his head via the drain inserted in his brain, the drain was clipped for 30 minutes to allow the drug to work, and then opened up again to allow fluid to flow out.
They did a CT scan to ensure they had a fresh picture of his head, both to see if there was any change from his prior scan and to make sure the pre-tPA scan was in place. It is all about noting differences between tests and/or drugs, especially in the early hours after an event like this. We needed to give the tPA 24 hours to do its thing, so we watched and waited. Russ continued to have scans and tests done during his first day and evening in the ICU. We still did not know the source of the bleed. We knew his lungs were starting to become phlegmy and he was not aspirating what he was coughing. We began to suction his throat, a feeding tube was administered via his nose so we could give him nutrition. I spent a good deal of time working with his dietician to ensure that he could be given at least two of our chosen Isagenix protein shakes per day as I knew those would give him complete nutrition, and she was professional and reasonable in understanding my request to not fill his body with what we believe to be mostly junk ingredients in traditional hospital tube feed choices. He had to have additional tube feed beyond the shakes to meet the hospital's calorie requirement for his particular situation, but thankfully, she recommended an organic feed that was approved for hospital use, but not stocked. We had to purchase it out of pocket and have it shipped to the facility, which I happily did. Check one box for ensuring he was being fueled properly for healing.
His third CT scan was done a little less than 24 hours after he was brought in to the hospital and showed no significant difference from the prior two. This meant that we were reasonably certain the bleeding had stopped. We could now be reasonable certain he had a bleeding event, and then it stopped. It was likely only moments in length and then the amazing body stopped it, had it not, our situation would be very different.
Only 24 hours since he was admitted and we were holding our own, but not moving forward as quickly as the neurosurgeons or critical care physicians had hoped. The good news is we believed the bleeding had stopped, the not so good news was we were dealing with a considerable amount of residual blood and the subsequent follow on symptoms from a traumatic brain injury.
This Thanksgiving, we were excited to be traveling to spend the holiday with our niece and her daughter. We had a number of errands and things to do in preparation. On Tuesday, 11/21/17 I left for work after our normal morning routine, all was well. Russ is retired, so the bulk of our to do list rested on him.
Upon arriving home from work that evening, I found Russ in bed, deeply asleep.
Me: C’mon babe, we’ve got things to do, let’s get moving
Russ: A tired babble
Me: Russ, are you OK? What’s wrong?
Russ: (not enunciating clearly or completely making sense, but eventually conveying his thought) I didn’t feel right so I came back to bed
That’s when I noticed his coffee and morning protein shake on the nightstand, both untouched, and put together that he had been in bed all day.
Me: Babe, what’s going on? Tell me what hurts
Russ: (not enunciating clearly or completely making sense, but eventually conveying his thought) I was at the computer, my right side went numb, now I can’t move my legs
Me: I’m calling 911
Russ: (not enunciating clearly or completely making sense, but eventually conveying his thought) I was going to call, but the doors are locked and I didn’t know how I would get downstairs
Me: Babe! Look at me. Can you raise your arms above your head? Smile at me! Talk to me, what hurts?
I knew he was not OK, but given a moment, he could reason his way through the actions and the questions. Puzzling, and also clearly something that needed to be investigated by medical professionals.
The Fire Department arrived in 5 minutes, Medic shortly thereafter. He did OK responding to their questions. His blood pressure was high, and he had a fever. Off to the hospital in an ambulance he went with me following in my car.
Test after test ensued. Due to the fever, the ER docs were thinking meningitis or some other type of fast moving infection. Meanwhile Russ was sleeping more and more deeply and not always responding to questions or physical stimulus.
The results of his CT scan came back, and our lives changed.
The CT scan showed a brain hemorrhage, and a large tumor. Within moments inside a whirlwind of activity I was speaking to a neurosurgeon who told me he had to drill a hole in Russ’ head immediately to relieve the pressure from the blood that had gathered in his brain. After asking him a myriad of questions, including how many times have you done this, I agreed, signed the consent and then cried, hugged and stroked my husband’s head while he was being prepped for this procedure to be done in the ER. I walked out of the trauma room stunned and went outside for a few moments. Most of it was deep breathing and shaking my head to try and keep it clear, and some of it included a thought process along the lines of are you effing kidding me? Really, I mean really? A future blog will explain the depth and meaning of that particular part of the reaction in more detail, but suffice it to say what the melt down lacked in duration it made up for in intensity. I was momentarily bewildered, suspended in a dream world, lost, royally pissed off, and completely terrified. Sailors ain’t got nothing on me. It was absolutely fucking surreal. And then it wasn’t.
I pulled it together quickly and I knew I had to walk back in that ER and bring my A game, become educated, and advocate for Russ like nobody’s business. I went from crushed and cowering to believing with every fiber of my being that Russ and I still had a story to live and memories to make. This much I knew. The drain in his head safely inserted and doing its job, we headed up to the Neurological Intensive Care Unit to begin our fight.
The next days both lasted forever and passed in an instant.
In the initial overnight hours after admission, Russ got progressively worse. He was not in a coma but was profoundly asleep, marginally responsive to questions and stimulus only sporadically, but enough to know he was still in there and fighting. The ICU nurse said it might be due in part to an anti-seizure medication they gave him once he arrived in the ICU. I was not allowed in the ICU until they had him in his room and settled, which was more than 90 minutes, so I was not aware he was given additional medications. She said this particular medication can make you drowsy. Upon hearing this I asked her to list off the meds he was given. There were a whole host of prophylactic medications, most of which I understood their purpose. Seizures are a very real possibility when the brain and head are irritated and in the midst of trauma, but it didn’t make sense to me to give him a medication that would make him drowsy when we were trying to assess how he was doing cognitively. We were waking him up asking him questions and testing him physically, and he was getting worse, more asleep and less responsive, with every passing hour. How can you assess brain function, or loss thereof, in a patient who is drowsy from medication? I asked for him to be taken off the medication, and after discussing Russ’ particular situation, the doctor agreed.
It’s important to ask questions and be involved. It is OK for you to be informed about every aspect of your loved one’s care. Russ received, and continues to receive impeccable care. But physicians are just like any other profession; just because you went to school and obtained your degree and training, doesn’t necessarily make you good at what you do. Greatness comes from knowledge, experience, character, training, watching and learning from mentors and teachers, how you were raised, who you surround yourself with, your attitude, tenacity, curiosity, how you treat others, and many other factors. Everyone has the capability to achieve greatness, your chosen field doesn’t make you great. Yes, becoming a doctor is a lengthy learning process and more difficult to obtain than many other chosen fields of study. Since medicine is seemingly so beyond the capabilities of us non-medical people, we tend to think of doctors as all-knowing Gods. Well, just like those of us who are not in the medical field, doctors have crappy days too, they don’t get enough sleep sometimes just like us, and they make mistakes too. No one made an error in giving Russ the anti-seizure medication, but once questioned and thought about more specifically weighing Russ’ particular factors, everyone agreed it would be a reasonable risk to take in not giving him the anti-seizure meds. Had I not asked what he was given and had I not questioned whether or not if that was the right call given his status, he would have continued to receive medication that made him drowsy when one of his core issues was blood in and around his brain stem, which is why he wasn’t really waking up or responding as he should. It didn’t necessarily take us longer to figure out the details because of this one thing, but it might have. When you are advocating, please do not be afraid to ask and keep asking questions until you understand.
We are still on Day 1.
There was no shortage of physicians coming by to check on Russ. The team of neurosurgeons came in late morning, spent some time explaining more about Russ particular situation to me, importantly including that the tumor was 95% likely to be a benign brain tumor called a meningioma. Honestly, they explained that the tumor was not at the forefront of our immediate concerns, we were full court press on the hemorrhage and the resulting residual blood and after effects. While watching over him and waiting, I researched meningiomas, and calmed down recognizing that the tumor would need to be removed due to it's size, but comfortable in that we didn't need to talk about it now. With every passing moment, I was realizing we were months away from that discussion.
Russ was responding more in the afternoon, following verbal commands, squeezing hands, wiggling his feet and making the thumbs up sign, but he wasn’t speaking or opening his eyes. So, he was coming around ever so slowly, but it was not fast as we had hoped. The drain in his head was working, we could see blood coming out along with cerebrospinal fluid (there was a bag attached to a stand next to his bed where we could watch his progress), but he wasn’t exiting enough of the blood on his own steam. Getting as much blood out of his head as quickly as possible was critical.
The doctors recommended, and after much discussion and explanation, I agreed to give him tissue plasminogen activator, or tPA, commonly known as the “anti-stroke drug.” This is the drug where if given within three hours it can help reverse the effects of an ischemic stroke. Russ did not have an ischemic stroke, he had a hemorrhagic stroke, and they are very different types of stroke, so using tPA in his case would not reverse damage. It would be used to assist in breaking up the blood clots. It is basically an incredibly strong blood thinner. There were definitive risks involved, but after discussing with the neurosurgeon, I agreed that the benefits outweighed the risks. The tPA is administered three times, once every eight hours, and then a CT scan is performed to check progress. The drug was placed directly into his head via the drain inserted in his brain, the drain was clipped for 30 minutes to allow the drug to work, and then opened up again to allow fluid to flow out.
They did a CT scan to ensure they had a fresh picture of his head, both to see if there was any change from his prior scan and to make sure the pre-tPA scan was in place. It is all about noting differences between tests and/or drugs, especially in the early hours after an event like this. We needed to give the tPA 24 hours to do its thing, so we watched and waited. Russ continued to have scans and tests done during his first day and evening in the ICU. We still did not know the source of the bleed. We knew his lungs were starting to become phlegmy and he was not aspirating what he was coughing. We began to suction his throat, a feeding tube was administered via his nose so we could give him nutrition. I spent a good deal of time working with his dietician to ensure that he could be given at least two of our chosen Isagenix protein shakes per day as I knew those would give him complete nutrition, and she was professional and reasonable in understanding my request to not fill his body with what we believe to be mostly junk ingredients in traditional hospital tube feed choices. He had to have additional tube feed beyond the shakes to meet the hospital's calorie requirement for his particular situation, but thankfully, she recommended an organic feed that was approved for hospital use, but not stocked. We had to purchase it out of pocket and have it shipped to the facility, which I happily did. Check one box for ensuring he was being fueled properly for healing.
His third CT scan was done a little less than 24 hours after he was brought in to the hospital and showed no significant difference from the prior two. This meant that we were reasonably certain the bleeding had stopped. We could now be reasonable certain he had a bleeding event, and then it stopped. It was likely only moments in length and then the amazing body stopped it, had it not, our situation would be very different.
Only 24 hours since he was admitted and we were holding our own, but not moving forward as quickly as the neurosurgeons or critical care physicians had hoped. The good news is we believed the bleeding had stopped, the not so good news was we were dealing with a considerable amount of residual blood and the subsequent follow on symptoms from a traumatic brain injury.
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