Today is my 55th birthday.  Another year on this planet.  Apropos to write again about how life can change you when you are least expecting it.  

Continued from prior blog... 
 
The next day was Thanksgiving, we were 36 hours in at this point.  Russ was receiving the tPA and was due for his third dose around 12noon and then a CT scan.  Overnight, his O2 levels dropped and he had to be put on oxygen.  An overnight x-ray confirmed fluid in both of his lungs, it was disturbing how fast that came on.  He was put on a fluid removal drug and began every four hour respiratory therapies.  The critical care doctors kept talking about a breathing tube as they didn’t want to get to a point where his body was working so hard on breathing that it couldn’t focus on other more important things.  It was very difficult not to react emotionally, and I felt good that I was holding my own on that front; I resisted inserting the tube.  To me, it felt like a turning point that wasn’t yet warranted.  His body was strong, I knew this because we focus on our nutrition and keeping our bodies in good condition.  Also influential in the decision to hold off was his response to the breathing therapies.  Although he could not aspirate well on his own, we could suction his secretions and he was doing a great job of working hard with the therapists.  I wanted to give him a chance to work through it on his own.  The critical care docs were not entirely pleased with me, but again I stress to anyone facing a critical situation that no one knows your loved one better than you.  I wasn’t placing Russ in harm’s way by defying their recommendation, I was advocating not to take a significant and serious step when he was strong enough to work through it on his own.  I knew it was still a real possibility, and I let the doctors know I respected their advice and would heed it if and when it became clear there was not another, less invasive way. 
 
On a much more positive note, he was doing well on Thanksgiving, responding to verbal questions and physical stimulus and speaking.  His speech was very compromised, slurry and not many consonants, but he was speaking!!   Also, he moved both of his feet all of the time, even during the deepest sleep, so I knew his body was functioning and that perhaps we would be in a good place when we could actually ascertain what function he had lost due to the stroke. 
 
My husband is a funny guy.  He must have known I needed to smile because when I asked him how he was doing he said he was fine, but that he needed a new outfit.  I asked him what for, and he said he needed it for space travel!  I was like really babe, when are you going?  He said, I have already been and now I am going back, but I need a new outfit before I do.  I assured him I would hop on Amazon and have one sent asap.  Bless my adorable funny man.
 
He completed his third dose of tPA, unfortunately his CT did not show significant change.  The neurosurgeons recommended another round, so we kept going.  He passed a few clots through the drain, which was awesome.  We continued with breathing therapies and x-rays to stay on top of his lungs, which were improving very very slowly.  I still felt great as any improvements are a good thing, and even though we didn’t know the source of his bleed, we were still moving in a better direction.  He completed 3 rounds (One round = 3 doses 8 hours apart) of the tPA, which helped in moving the blood out of his brain.  More tPA would not have improved our situation, so we stopped that drug after his ninth dose. 
 
In addition to continuing to work on his lungs, he was struck by hiccups, which sounds funny, but really wasn’t.  Apparently, hiccups are a common affliction with neuro patients.  Poor Russ had them for hours upon hours.  Ice chips seemed to help, but he could only have a few chips every hour as he still did not have the ability to swallow properly.  Six hours one night, four hours the next day, then seven hours, then two, they were persistent!
 
Six days after his admittance he was strong enough, and enough blood had moved out of his brain that the doctors performed a procedure called a CT angiogram.  Said simply, they inject die into the vessel network in the brain and take pictures to watch how the blood flows.  The neurosurgeons did not hold high hopes for the test telling us the origin of the bleed, they were pretty sure he had a blood pressure spike in an area where the vessels were weak and it caused a leak, and this test wouldn’t help identify that, but we went ahead as there are other potential causes for a bleed like Russ’ and we needed to rule them out.  He was sedated and the test was performed.  As his most prevalent issues were the inability to swallow, no gag reflex, and profound sleep, they strongly suspected his injury had occurred mid brain, near or on his brain stem.  So that is where they were most interested to see the angiogram test results.
 
Also on this day, we began “raising the drain.”  The drain had done all it was going to in terms of accelerating the exit of blood, the next step was to raise the drain gradually over three days and then remove it.  The brain and body will reabsorb the residual blood over time.  The docs said four to six weeks was a good timeline to allow the majority of the blood to reabsorb, at least enough so they would not be impeded by the volume in looking at additional scans/tests.   The drain intervention and the tPA allowed us to get most of the blood out of his brain ventricles (we all have four, and having blood in any of them is not a good thing), and now we needed to let the body do it’s thing. 
 
The next day marked one week since we had come into the hospital, and it was a turning point in that we got the angiogram test results back and they were very telling.  Russ has an Arteriovenous Malformation, or AVM.  In the simplest terms, it is a cluster of rogue capillaries that allow much more blood to pass through them than they should.  Over time, the capillary walls become weakened and leak or bleed.  An AVM is very unusual, they occur in less than 1% of the population.  They are believed to form in the womb when the brain network is forming, so something he had his whole life.  They are not hereditary, and he didn’t do anything lifestyle wise to make this happen.  It just is.  The test confirmed the AVM was near his brain stem, in the deep brain, underneath his left brain lobe, next to his brain stem, not actually in the brain itself, but nestled deep under.  He will require surgery to remove it from what is honestly, a very tricky location. 
 
The angiogram also clearly showed his tumor and it is shockingly large, it kind of looks like an elongated golf ball.  It also confirmed it was growing from the outside in, which is typical of a meningioma tumor, thus assuring us it was almost certainly benign.  Meningiomas occur in about 5% of the population, and most impacted people never even know they have them.  They grow extremely slow.  Russ’ had been there a long time, many years.  A small portion of it (think the tip of your pinky) has impeded the brain barrier.  This means it has to be removed.  This will require another brain surgery. 
 
There is a lot more that happened in this beginning stage of this journey.  The abbreviated version is that Russ did not have to be intubated, he worked hard to get his lungs strong and we worked through that situation without further invasive intervention.  We were able to get him through his stay with minimal additional drugs, only administering him medications when they were critically needed, and that required active involvement, respect for each of the many physician’s individual and collective knowledge and recommendations, independent research, and sometimes not agreeing with those who are far better trained in medicine than you. Our purpose was not to inundate you with detail, but to include it where there might be a learning for someone else facing a similar situation.  Advocating in an emotional situation is challenging at best, and we are all in this life together. 
 
We have chosen to view all of this as a blessing, and we ask only that you support us in our approach.  Russ’ AVM could have continued to bleed instead of closing itself off, and that would have killed him.  We now know what the problem is and how to deal with it, and that, we believe, is a gift. 
 
Russ continues to have issues with his vision, his balance and some of his cognitive abilities.  He cannot drive, nor do many of the things he (and I) took for granted prior to this.  He is actively healing and preparing his mind and body for a long road ahead.  He continues to go to therapy to help with all of these issues, and we work on them every day.  
 
Yes, we are facing two or more brain surgeries over the coming months, and that is a bitch.  But here is just a sliver of the things we are grateful for:

• We know exactly what we are dealing with
• We have a team of incredible physicians who treat us with respect, are impeccably trained and who are bringing their A game inside and outside of the OR
• We have an incredible family, the best neighbors ever, and network of friends to support us
• We have a roof, and food, beautiful fur family members, and insurance, and the wherewithal to go through a difficult situation
• We are TOGETHER.  We found each other later in life (after a 32 year break that followed after we grew up and went to elementary and high school together).  This is a GIFT, where would either of us be right now if we were not facing this together as a couple?  When we got married, we were old enough to know what it actually means to respect and care for each other, no matter what life brings.  
• We have the means to handle whatever happens, even if we can no longer work
• We are physically and mentally equipped to deal with this

 
“Owning Your Best Life Now” doesn’t mean prancing through tulip patches with a never-ending smile while shielding your eyes from the brilliance of rainbows, although that does sound like a lot of fun (especially the prancing).  It means facing whatever life brings you with as much grace, agility, grit and acuity as you can muster; deconstructing what scares you so much you cannot breathe, until it no longer rules you because your tools are sharpened and the game is on.  Said simply, think, behave and do your best.   We are working on it. 

​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.