Thursday, December 19, 2013

An Altered Mind leads to An Altered View

Hello friends… once again I find my self telling you how sorry I am that it took me so long to write a post.  Rehab Hospitals really wear you out, especially when they expect you to do therapy so many times a day (geez, it is like they expect me to learn this stuff so I can go home and live a successful life!)

Anyway, this post is not from me.  It is from a sweet medical student that I have known for nearly 3 years.  She is a 3rd year Med student here at UT Southwestern Medical Center and she is in the stage of her learning where they do rounds in the University hospitals, clinics, VA, Parkland, etc…  She recently wrote a "Reflection Essay", which is a requirement for the students upon finishing rounds for a particular specialty.  For this essay she was on Neurology rounds at St. Paul Hospital.  I am sure you all see where I am going with this.  So without further comment from me I am going to let Laurie speak (I have left off her last name for her privacy).


Laurie
November 11, 2013
Neurology Reflection Essay

The day before I finished my two week rotation at St. Paul, I was assigned a patient with one of the scariest HPI’s I had heard in a long time: she was a woman who had had an aortic dissection and subsequent rupture, had coded, underwent emergency endovascular repair, and later had developed altered mental status, which is why we had been consulted. Her primary team thought she might have had a stroke, and my resident explained that based on the history alone, he thought this was likely. He gave me her last name and room number and I went off to see her, noting incidentally that her last name was the same as someone else’s that I knew.

I walked up to her room in the ICU, saw her lying in bed through the sliding glass doors and reeled backwards. She wasn’t a generic patient who shared a last name with my friend; the patient was my friend, and she looked every bit as terrible as my resident had promised she would. I was frozen standing outside her room, my brain jammed, unable to process this situation. I turned to my teammates who had come down to see her with me and kept repeating, “I know her, I know her!” over and over. It was several seconds before I was able to pull myself together and walk into her room.
She looked awful. She was drowsy and would only occasionally follow commands, fighting feebly against her restraints. I fumbled through my neurologic exam and hurried out. To my immense relief, her family convinced the primary team to give her a sedation holiday later that day and it was discovered that she had not, in fact, had a stroke, and once off the sedatives her mental status returned to her normal baseline.

It wasn’t until I went back to visit her days later simply as a friend and not as a member of her healthcare team that I realized how foolish it had been for me to accept her as a patient at all. Apart from the fact that I nearly had a meltdown in the middle of the ICU, I hadn’t even come close to doing a complete neurologic history and physical on her: despite the patently obvious finding that she had lost most of her sensation and motor function in her legs, I didn’t ask about bowel or bladder control, I didn’t check rectal tone or perianal sensation—I didn’t even get a pinprick sensory level on her because I didn’t want to have to lift her gown.

In reflecting on this experience, I discovered something that surprised me: I had always thought that the primary reason treating family and friends is discouraged in medicine was because, in their zeal to go above and beyond and do everything for their loved one, physicians might end up doing something not truly in the patient’s best interests. That wasn’t at all my experience, which in fact had been quite the opposite—I had delivered unquestionably subpar care in my efforts to not embarrass my friend.
As it turns out, this is apparently more often than not the case. Dr. Scott Kirby, medical director of the North Carolina Medical Board, is quoted in an article on treating family and friends, remarking, “Physicians provide care to family members [and friends]…that is generally below standards. They cut corners. They don't do things they would normally do in treating a patient” (1). In the American College of Physician’s Ethics Manual, the authors elaborate: “The patient may be at risk of receiving inferior care from the physician. Problems may include effects on clinical objectivity, inadequate history-taking or physical examination, overtesting, inappropriate prescribing, incomplete counseling on sensitive issues, or failure to keep appropriate medical records” (2).

That doesn’t mean it doesn’t happen, of course. In a landmark 1991 study published in The New England Journal of Medicine, authors found that 99% of 465 survey respondents had been asked for medical advice by a family member, and the vast majority of them had provided it. In fact, their level of involvement in their family member’s care ranged from performing a physical exam (72%) and prescribing medication (83%) to acting as their attending physician in a hospital (15%) and even performing elective (9%) or emergency surgery (4%) (3). 
 
Though my experience was perhaps rather dramatic, it did highlight for me the perils of participating in the care of a patient whom I knew personally. Already I have been asked countless times for medical advice both from family and friends, and I will continue my current party line: “That is an excellent question that I encourage you to discuss with your doctor.” More to the point, though, if in the future I should come across people I know personally as patients, I plan to respectfully decline to care for them in an effort to preserve the highest standards of care for the patient.


(I have left off the references to this essay because they are not pertinent to the story!!)

Laurie is a sweet soul and a brave young woman.  I have spoken with her and seen her several times since the incident.  She is going to be a great doctor and I am proud of her.  She told me she was afraid that she couldn't handle surprises like the shock she got from seeing me in the bed in the Cardio Vascular ICU unit.  I told her that she was wrong, that this incident has made her a better doctor because she learned that each patient behind the glass is not just a patient but a person.  That is a lesson all doctors in training need to learn.

With Much Love,

Sonnie

Tuesday, December 10, 2013

T.G.I.F - Thank GOD it's Friday...

Hey there… I missed you and I apologize for the delay in posting.  My mountain decided to have some serious valleys come along and try to trip me up.  But that story does not fit into this time line.  So… it's finally Friday and I am fully Sonnie… what an amazing, wonderful, miraculous occurrence.  Who would have thought that the outcome would have been so spectacular.  That I would be fully and completely me and have no damage to my brain at all.  In fact, the MRI showed that my brain is perfect.  Hey you out there… be nice… I didn't say it, the doctor did!!  So let's move on to that whole story, shall we??

Friday… ah, the day that most working folk look forward to… the day that, once over, shepherds in the weekend.  I was told that Friday morning I would have my fourth and final surgery and then have an MRI while I was still out from my surgery.  I thought this was odd as I had endured 3 previous MRI's in my past and didn't have any issues with them, they are loud, but, no big deal.  The morning was actually starting to move along and no surgery.  We were starting to wonder what was going on.  Well the surgical team finally came in and proceeded to tell me that my surgery would be done in the afternoon instead.  The MRI was going to be done first.  Oh, panic started to set in just then.  The big question and worry for me was "Are you going to put a breathing tube in my throat??"  Oh how I hate those things, I was actually tethered to the bed for my want to pull out my tube in the ICU during my dark week.  Much to my relief, the answer was no, if I could endure the procedure, they would let me go in without putting me under.  They asked if I could lie still for the whole procedure, yes was my answer.  "Are you sure??"  "Ummm, yes, I have had 3 before.  Two on my brain and 1 on my leg, no problem."  See, at this point I still didn't know that I had tried to beat up the MRI Tech… geez.  Needless to say, I was slightly embarrassed when I found out that little tidbit of information.   At any rate, off I went for my MRI armed with my ICU nurse, who thankfully had lots of pain meds for my back so that I could endure the 2 hour test.  I made it through without so much as a muscle twitch, well, close enough for government work as my mom used to say.  Thanks to the pain meds and the encouragement from my nurse, Suzanne and the techs the MRI wasn't all that bad.  Funny thing was that my nurse and Suzanne had to convince the techs that I was the same person they saw on Wednesday, I guess I was much nicer on Friday than I was on Wednesday… at least I didn't take a swing at anyone.  Friday was getting better by the minute.

Back to my room in ICU.  We were taken by my sweet transport tech Gordon…Flash, as we liked to call him.  What a fun guy and such a sweetheart.  Flirted with me shamelessly, which was so sweet considering I know what I looked like after a week of ups and downs, highs and lows.  I was a mess and I know it.  He was funny and we enjoyed his jokes, he made the day that much brighter.  He actually told me that I was his favorite patient of the day.  Thank God for kind people when things have been rough.  No sooner than we got back from the imaging room to my ICU room and up pops the surgery team to get me for my final surgery.  Whisked off to surgery to remove a large blood clot from my left chest and insert yet more drainage tubes to get rid of fluid pooling around my heart and lungs.  I came out of that surgery with flying colors and was awake and alert very shortly after the surgery, much to the surprise of Wes (my "Big Boss") who had come to see me following the procedure.  He was shocked and amazed that I was so peppy and happy right after my surgery.  He kept asking me over and over again if I really had just come out of surgery… yes, of course I did, just now, I said with a large grin on my face.  I think he thought I was crazy and amazing all at the same time.

He is not far from the mark with that thought…

Be good to one another, you never know when someone has been through something rough.  Until my next post…

With Much Love,

Sonnie

Sunday, December 1, 2013

What are you going to be for Halloween?? A sick girl in a hospital bed… what a great costume idea, or not!!

Thursday… Halloween, my costume had been the best up until Thursday morning, no one recognized me!  Then came a breakthrough.  A change in my behavior and personality.  It was as if the doctors were now dealing with a child.  When ever they would ask me questions the answer was always wrong and always very interesting.  Where are you?… New York.  What year is it?… 1980 something.  What is your name?… Sontana Cumberworth, oh… wait a minute… that one is correct, if I was still in the 80's anyway.  What day is today?  Jay helped me cheat on that one… he told me it was Halloween and I should make a Halloween face.  Apparently I thought that was a fantastic idea and so I made a very crazy face every time the doctors asked me what day it was.  As the day progressed I was actually getting some of the questions correct.  Or at least partially correct.  How many children do you have and what are their names?… 4 children, Nicholas, Parker, Nicholas and uuuhhh… see… partially correct.  Thank goodness I really only have 2 kids, but they are great kids and I am blessed.

Day turns to evening and the butterfly emerges from her crysalis.  Once again I defied the odds, amazed the doctors and returned from the brink.  I was now closer to myself then I had been since Tuesday morning.  What is your name?… Sonnie Hoots.  What year is it?… 2013.  What day is it?… Halloween, but don't ask me the date because I don't know.  Count backwards from 100 in increments of seven… 100…93… oh man, that is so not fair.  I am a math atheist, I do not believe in the existence of math.

Needless to say, the atmosphere that surrounded me changed for the better during that day.  The doctors and nurses were finally getting a glimpse of who I really am, not the crazy, violent or vacant girl, but the real me.  I think that everyone was just glad to hear me be myself again.  The amazing thing to everyone was that I was actually me, the same crazy, funny girl I have always been, no real neurological change.  What a day, a day to celebrate, a truly joyful day.  I got to talk to my sons and all my visitors, friends and family alike.

What happened that evening as I came to myself and actually became coherent is simply amazing to me.  See… when I finally was able to comprehend what was going on around me I wasn't upset that I couldn't move my legs or feel anything below my bellybutton.  I was paralyzed, and it didn't bother me.  Apparently as I was changing throughout the day and the drugs were going out of my system the doctors asked me several times if I could feel anything in my legs or if I could move them.  Suzanne said at one point the recognition of what happened and why the doctors were asking me that spread across my face.  I understood… really understood what the outcome of my condition meant.  When I "woke" so to speak, I already knew that I had become a paraplegic and for some reason I had already come to terms with it in my mind.  Hmmmm… that is a story for another day friends,

Until then, Friday is coming…

With Much Love,

Sonnie

Saturday, November 30, 2013

Mike, Mike, Mike, Mike, Mike… Guess what day it is Mike...

Hump Day… Wednesday came with changes… some slightly better than bad, more were worse.  The Surgeon had told Suzanne that  they were likely going to put a tracheotomy tube in to assist my breathing and monitor me as it was likely I was not coming back to my old self.  (Spoiler… we all know that I defied his odds before)  She argued with him vehemently, telling him that I was myself before the surgery on Monday and I was still in there.  See, Suzanne had more inside information that the doctors needed to hear.  I have severe reactions to medications.  I have a list of allergies to meds that is a mile long.  Believe it or not, I have actually been called a freak by a doctor in regards to the fact that I have so many drug reactions/allergies, HA!  She conveyed that to them and pleaded for them to understand the magnitude of the problem.  Finally it sunk in and the doctors agreed with Suzanne to try to ween me off the meds they had me sedated with and try something else.  They agreed to try her way first, if that didn't work, they would proceed to their original plan.  Problem was that the drugs were fat soluble and those take extra time to get out of the system.  Of course!!!

Meanwhile, there is an MRI needed.  Imaging of the brain and spine to judge first for stroke then for the severity of the damage to the spine.  Sadly, it seems as though I was not in the mood to lie in the MRI machine.  I refused to be still and would shake my head each time the machine would start and the awful and loud noise would fill the tube.  At some point the the tech tried to still and calm me I lashed out at him and hit him.  Thus they had to restrain me and were not able to run the test.  My disposition changed from vacant to violent.  Anyone who really knows me can tell you that I am not a violent person.  I had to be tethered to the bed to stop me from pulling out "all those tubes and wires and careful nooks, and antiquated notions" (ha ha, my nod to Thomas Dolby), it was really just some tubes that I desperately wanted out of my throat and nose.  But in the state I was in I was far from understanding that I needed to leave those in and let them help me get better.  So Wednesday saw in me a change from sliding up into the corner of my bed and completely shutting out everything and everyone to violently fighting the restraints and hitting MRI techs.  Suzanne and Jay were able to calm me briefly by placing their hands on my cheeks and saying my name but that was not enough.

Was it ever going to get better?  Surely I didn't survive death, no, not near death, but actual death, to be left vapid and unable to live the life that God so graciously gave back to me.  To never again get to be a mother to my sons, a sister, daughter, granddaughter, family member, a friend, mentor, coworker, baker, artist, taxi cab driver, or all around goofball (something I am really good at).  Darlings, there is more, and there is always hope…

With Much Love,

Sonnie

Friday, November 29, 2013

The missing week… well, missing for me that is.

SO, successful surgery under my belt and sleeping in ICU, the wee hours of Saturday slowly become morning.  Saturday the sun rises and I am alive, gloriously alive and that is a miracle.  Suzanne stayed the whole night at the Hospital in that small waiting room to be there just in case something happened.  But on Saturday and Sunday I was awake and aware, nodding when I was asked questions and squeezing fingers in response to being spoken to.  I was able to recognize friends and family.  Respond to and understand questions.  I was me in spite of what I had been through.  Sometime over the weekend Dr. Odeh did a spinal tap on my back to try to get the blood flowing to my spine again.  That was left in for 24 hours and then taken out as my spine was not responding to the effort.  Sunday the lung specialist told my surgeon that he needed to drain the blood in my chest because my lung had collapsed and I was having trouble breathing.  The vascular surgeon, Dr. Chung, was not in agreement.  See… the blood had purposely been left in my chest in the hopes that it would clot the torn area of my aorta and thus give extra support to the repair.  The goal was to leave the blood for at least a week.  This was not, of course, my body's plan.  Monday morning arrived and Dr. Chung told everyone that I was doing well and that things would be left as is for now.  This was about 8 am.  Come 10 am the story changed.  Dr. Chung came back and said that the distress on my lung was so bad that he had no choice but to operate to drain the blood so my lung could inflate and I could breathe.  This is when he told Suzanne and Jay that this surgery was extremely risky and that the likelihood of me surviving was very low.  During this surgery if I for any reason started to bleed then there would be no way for the team to stop the bleeding and I would die, no way to save me if that happened.  His outlook was very bleak and that was understandably very scary for Suzanne, especially since she had to sign the consent forms.

Surgery on Monday afternoon to remove the blood was successful and they drained 3 liters of blood from my chest cavity and inserted a drainage tube to drain off residual fluids.  Once again, I beat the odds and surprised the surgery team.  Thank the Lord he had his hands on me the whole time.  Monday turns to Tuesday and something is wrong.  For some reason I was vacant and non-responsive.  I wouldn't listen or respond to any questions or look at anyone.  I favored my left side and kept sliding myself into the top left corner of my bed.  Dr. Chung told everyone that this was the result of my brain lacking oxygen and blood for over 10 minutes on Friday and that was just how I was going to be from then on.  They also suspected that I had had a stroke while in surgery.  Tuesday was a bad day indeed.

Wednesday is another day… I will continue the story from there.  Until then friends… Tell the people in your life that you love them, don't wait, for you are not guaranteed a tomorrow.

With Much Love,

Sonnie

Sunday, November 24, 2013

Go Speed Racer, Go Speed Racer, Go Speed Racer…. GO!!!!!

WHAT?!?!?!  She is where?!?!?!?  The shocking news came late in the evening for Suzanne and Jay, who were enjoying a relaxing evening at home in Shreveport, LA.  Suzanne screamed at Jay that they had to go to Dallas, NOW!!!  Those of you who don't make that trip need to know that it is a good 3 hour trip when done under normal circumstances.  Panicked and scared is a completely different story.  They both started to throw stuff into bags not knowing what they would need.  I laugh when I hear Suzanne tell this part of the story because she admits that the packing was a bit off… well… maybe more than a bit.  Jay proceeded to drive since Suzanne was shaking and crying and trying to call folks to get them up to the hospital and to just inform them what was happening.  Throughout all this they were able to be in contact with people at the hospital like Atesh and Tracy in order to keep updated and know what was happening.

A slow trip to Dallas was never the plan but let me tell you… when you need to slow down, there are ways of making that happen.  Try a flat tire… that should do it, ya think?  Suzanne and Jay got relatively far and had to make a pit stop.  Upon coming out of the truck stop/convenience mall (we've all seen these that have the multiple restaurants and all the extra junk that no one needs but we all buy, well I sometimes do) they got back in the car and started back on the way.  Thump… thump… thump… seriously, a flat now??  I can just hear Suzanne's brain going… You have got to be kidding!!!… I do not have time for this people!!!  Missing and then found tools complicated the whole "change the stupid tire so we can get back on the road" process.  Once they got back on the road things went smoothly.  Atesh had sent a picture of the entrance that Suzanne and Jay needed to go to at the hospital, genius move as it really helped them get to the right place at the right time.  Once they arrived at around 1 am they were immediately taken to the waiting room that was currently being occupied by about 30 of my friends and family.  (I have the best support system out there, just saying')  Suzanne said that once she saw Tracy she just gave her a big hug and felt like they had known each other for years.  Shortly there after the surgeon came out and informed the whole group (what a daunting task) what had happened and what was done in surgery to correct the problem.

So you all know what happened… I ruptured my aorta, died for 10 minutes, bled out 80%, was brought back and whisked into emergency surgery.  There the surgery team corrected my aorta issue with a stint that cuts off the artery to my left arm (because according to the surgeon, most people are not left-handed, needless to say his head dropped when I told him that I am, in fact, left-handed, ha ha…) it covers the upper area of my aorta.  A complete repair, in fact, it is 2 full stints covering a very large area.  The surgery was 4 hours and they had moved me to ICU for recovery.  Few were let back to see me in ICU and only 2 at a time when they were.  What a scary thing for all my friends and family.  Little did everyone know that a successful surgery was the start of a very dark week for me.  Even though the surgery went well and all things looked good at that point, the coming days were enough to frazzle anyone… and they did.  That part of the saga starts tomorrow friends.  Until then know that I love you and am blessed to have you!!

With Much Love,

Sonnie

Saturday, November 23, 2013

A Drama to Rival the Hit Show ER…But in Real Life.

So…. you read Tracy's perspective, now let me tell you what has been conveyed to me in piecemeal of what happened and all the technicalities of the drama.

I left you with the speed bump on the road to St. Paul Hospital, simply because that is all I could remember.  But… according to my sources (Tracy, Atesh, Ivette, Charlie… etc) as I sat on the ER table in the midst of all the crazy I was texting my girlfriends at 6:38 pm and telling them that I wasn't going to make movie night because I was in the ER with possible heart issues, please pray for me.  I know this one because it is eerily on my phone even though I have no recollection of sending it.  Atesh texted me back asking what happened, where was I, do I need them to come up, was I alone.  I never responded.  During all this time I was having an EKG, x-rays and a dye test done and the doctors had determined that I had aorta issues, as this is what killed my father, the stakes became very serious at this time.  My friends called and I finally answered when Charlie called and spoke with them about the situation.  I kept telling Tracy that I didn't want to call anyone because I wanted to be able to tell them exactly what was going on when I did call.  In hind site, maybe that wasn't the best plan… oh well, I am psycho, not psychic…  At one point I did text my friends back, it was 7:17 pm to tell them I didn't know much and per Tracy, that was very close to the time that I coded.

Throughout all this there were so many different mini dramas playing out that it is hard to keep track.  Wes, my department Vice President had been at the hospital for a while and had gotten Tracy some dinner since she was staying with me in the ER.  He then went home leaving me in Tracy's capable hands.  All the while, Tracy was still asking me to call people, which I refused to do.  My girlfriends had then decided that they needed to come up to the hospital just to be there for me. Let me tell you, I have a great group of friends… I'm just saying'.  So back to my little corner of the ER.  The doctors had already determined that I had aorta problems and they were about to send me to ICU for observation leading to surgery.  I was in tremendous pain at this point and had told the doctors that my pain level was 9, no 10… no, I can't handle the pain any longer and then I died.  Tracy heard the doctor say "CODE BLUE" and she stood up, her wonderful number 1 dinner flying everywhere as she started to pray for me.  Then came the convergence… a plethora of doctors flying into the small ER room, all of them working in concert to try to save me from something that no one, let me emphasize that, NO ONE, ever survives.  Tracy continued to pray fervently as the doctors worked like a well oiled machine.  Once they brought out the paddles Tracy had to leave the room.  Who can blame her, it would have freaked me out too… Tracy left to the hall and started to pray out there and call Wes to come back, informing him that I had died.  The doctors labored over me for 10 full minutes before they were able to bring life back to my body.  No, don't ask, cause I don't remember the light or anything else as far as that goes.  I think my body shut down everything including my brain to conserve blood because I bled out 80%.  I ruptured my aorta, bled out 80%, died for a full 10 minutes and they were still able to revive me.  WHAT?!?!?!  Look up the odds on that one why don't you?  Can't find anything??  That is because there are no odds on that one… it doesn't ever happen, EVER!!

Meanwhile, Tracy is still in the hall praying… when one of the staff came to her and told her that she could stop praying, God had heard her and that I was breathing.  That is when Tracy went into action and got my emergency contact from the desk, telling them that this was surely an emergency, I had died, after all.  She called Suzanne and Jay, and once she got ahold of them told them what was going on.  At this point I was rushed into surgery to correct my aorta with stints, a nearly 4 hour surgery.  As I was being operated on, Wes and Tracy were trying to find contact information for my family with the help of Cynthia, whom, I might add, had come in to find this info and brought her fiancĂ© from their date to help.  Isn't that awesome, what a trouper!!  During this time friends and family started to arrive because Suzanne was able to get ahold of my son, Nicholas, and her mother, Kathy along with Ray too.  All the Bunco girls started to arrive as well… apparently after the surgery, the doctor came out to a waiting room full of about 30 people.  But, my friends, that story is going to have to wait for another day.  There is more to this drama from another point of view and I will start that tale tomorrow.

With Much Love,

Sonnie