Sunday, September 25, 2016

Wal-Mart Panic Attacks

I woke up feeling fine this morning. Not overly stressed, or worried - just ready to enjoy a day with my girls. I didn't think it would turn into a situation like it did.

I had a panic attack in the Halloween aisle at Walmart. Full out blood pressure through the roof, sweating, hyperventilating, panic attack.

At its onset I couldn't figure out what had triggered it - but once I was past it I realized what it was.

I had walked by the baking aisle before going down the Halloween section and had thought about making a cake - I've been wanting to do some fun baking stuff with my girls - and then as I picked up the box of cake mix, I just said out loud "No" - then inside my head the litany of 'stuff' requiring my attention began to fly through my mind - you've got a paper to write due at 9:59pm tonight - You've got to go to work tomorrow and Tuesday and Wednesday is PT and 2 Parent Teacher Conferences - the laundry needs done - you better get the girls showered fast after dinner so you can work on the paper - You need to do your MedX podcast - Then you've gotta work the rest of the week - and also Saturday and Sunday - Oh and you need to change her GTube out....

My brain went so lightning fast that it had gotten itself a week ahead of itself and it's necessary duties.

And then the hyperventilating, crushing anxiety hit. It's like running a mile, but not even having taken one step.

I don't know why this happens. It has no rhyme or timeline - it just happens when it wants to.

But what spurred it was the baking. What my heart wanted was to be with my girls. But my brain couldn't see past the ever growing to do list.

I often wonder how I can change what seems like an unchanging landscape of trial after trial - insane moment to insane moment.

Is this really what life is supposed to look like? Maybe not for all - but I'm beginning to think it does for me.

Messy. Destructive. Beautiful.

Perhaps the panic attacks are just par for the course.

Perhaps this is just what life has in store.

I just really want to be with my girls.

So much it induced a panic attack in me.

If I say I'm fine - I'm not lying. It's a half-truth. I put on a great show. I'm fine most moments, until my head and heart become enemies of one another.

Duality. Perhaps that's what can best describe my life. Duality.

The Mother who works, goes to school, advocates - yet there is this inner person who is clawing at the edges of a deep pit of worry and anxiety.

Whatever it is I am - I just want it to be with my girls at my side.

Thursday, September 8, 2016

A Journey of Self-Assessment - From The Mind of a 9 Year Old Medically Complex Patient - Stanford Medicine X

Alexandra Mae Edges was born at 4:28pm on July 5, 2007. She was born with Heterotaxy Syndrome, Complex Congenital Heart Defects, and a rare liver vasculature anaomly called Abernethy Malformation. She has undergone 5 open heart surgeries, an abdominal surgery, countless cardiac catheterizations and other procedures. She has been evaluated for a combined heart/liver transplant by three of the most prestigious centers in the U.S - and has been denied all 3 times.

She is my daughter. Her journey is my journey. I tell her story until she is able to tell it herself.

We do not often talk about mental health in children, perhaps maybe about ADHD, and other issues, but never about the impact that complex medical conditions and chronic illnesses have on children. This post - this story and journey is about physical and mental manifestations of Alexandra's condition, and how her therapist uses the idea of self-assessments to help Alexandra to come to terms with her negative feelings about herself. Alexandra began this therapy back in March of 2016, and has come a long way in her therapy.

Alexandra taken by Gilles Frydman April 2016
Gilles description of her "Sadness and Wisdom"

Alexandra's first brain self-assessment.
September 1, 2016

Oftentimes Alexandra portrays her brain as happy. It is not until she beings to describe her internal organs, be it thoracic or abdominal organs, and even her limbs that we can see her true feelings about herself. At this point in her life her emotions don't seem to be connected to her brain, they are connected to how her body 'physically' feels. 


Alexandra's brain self-assessment September 8, 2016.
Described by her as a "happy" brain. Therapist wondering why the line of declination from red to black shaded brain matter.


Initial drawing of her heart, March 2016

Once we begin to look at how she perceives her organs, we can see how her physical body affects her mental state of mind. Here you can clearly see the lines drawn on her heart which she described to her therapist as "all the flipping heart surgeries I've had - its broken". She refused to tell the therapist what the olive green mass was. 

Heart by Alexandra. July 2016. 

As her Mother, this particular picture is very hard to see. She has labeled emotions inside her heart, and also you can see the line of broken (spelled borken to her). Thankfully there still looks like a lot of love. 

Cocoon heart. August 2016. 

Notice how the line of broken is gone in this picture. She says her heart is in a cocoon and it will turn into a butterfly soon. The heart has a smiley face. 

Happy Heart. September 1, 2016

Alexandra gives us a peek into her inner psyche best when she is faced with a whole body self-assessment. She gives her organs emotions, and describes what they do or do not do. 

Initial self-assessment. June 2016. Alexandra describes this as "poop". 


Self-Assessment June 23, 2016 Alexandra called this "AHHHH!" 

In January of 2016, it was discovered through cardiac catheterization that Alexandra's left lung was no longer helping to oxygenate blood as it was riddled with pulmonary arteriovenous malformations. Here you can see how she labeled her left lung all colored in. She also told her therapist that in this picture she feels like "poop". We get that a lot with this young lady!  


Self- Assessment July 2016. "Sad Liver"

One of the most interesting things I find in analyzing her self-assessments is the fact that she gets her anatomy correct. Her liver is in fact more towards the left, which she correctly displays here as if she was looking down at herself. Interesting enough as well she also has told us a story about leaving her body during heart surgery and seeing her body lay below her with her chest open and blood everywhere. She can even describe the surgeon and the noises as during this particular surgery she had a bad bleed that could not be found and the surgeon was scrambling to find the bleed. We almost lost her that day. Eventually she was given Factor 7 and came out of the bleed. Only to find out that 3 months later she had over 100mL's of free flowing blood in her abdomen during a laparoscopic  LADDS procedure. 

 Self- Assessment Late July 2016. "AHH for Chicago"

She has written a curved line here and explained that this was her worsening scoliosis. She will one day have to have spinal fusion to correct it. In early August of this year we traveled to Chicago to see a world renowned doctor who specializes in Abernethy Malformation. She underwent a venogram to see if there was any semblance of a portal vein. She indeed has a porto-systemic shunt that has pulled blood flow away from her liver and is never filtered by the liver. The doctor can do surgery to correct this shunt - but it is a very long, difficult recovery. Alexandra was very concerned about this. 

Self-Assessment August 18, 2016. Emotional session. 

According to Alexandra's therapist the above self-assessment and session was the most emotional to date. Alexandra cried for the first time. She explained that she was terrified of having the surgery to correct her Abernethy Malformation. 

Self-Assessment late August 2016. "Gone on Vacation"

Alexandra has an over 50 degree curve to her scoliosis. Braces have not worked for her because of the ever differentiating size of her abdomen due to high central venous pressures and an enlarged liver. Because of this, her left leg has begun to turn in as her hip juts out from the curve in her back. It causes her pain. She cannot walk long distances. She told her therapist that it goes numb and "Goes on vacation."


Self-Assessment September 1, 2016


Self- Assessment September 8, 2016 "Surprised"


The high cost of health care is no unknown matter. After much deliberation, my Husband and I decided to postpone Alexandra's shunt banding surgery til this Spring when we are more financially stable. Alexandra was very surprised, and is happy. Again here you can see that her left leg is again "gone". It seems all her organs are "surprised".

I truly believe that the idea of self-assessment in chronic illness and medically complex patients is something that can hold so many valuable insights into the minds of some of the youngest patients out there. Mental health in chronic illness should be a mandatory part of the treatment plan. 

This is only the beginning of Alexandra's journey of self-assessment. While I have done my best here to try to give her voice, I truly believe that if we all take the time to really look at her drawings we can see a little girl with a big health problem and a very strong spirit. 



The Day We Took Her Home July 2007

The 4 of Us - The Edges Family 









Sunday, September 4, 2016

Face Collector - Stanford Medicine X

I sit in the surgical waiting room, surrounded by family.

I feel quite alone, even though the banter throughout the room is lively.

They are cutting into my child's chest, I hear the surgeon say in my mind "retractors".

I've watched enough open heart surgery videos on You Tube to know exactly what this looks and sounds like......and this is her 5th heart surgery. She's only 4.

That reality was over 5 years ago. It was when I first coined the phrase "I collect faces".

But instead of focusing on the reality of the operating room in this story, I want to reflect on the reality of the people outside of those operating rooms. I even want to reflect on the faces of clinicians as they come to update families of those patients in the operating rooms.

I see the faces of  parents, grandparents, friends, of these children, and the gamut of emotions that run across their faces from moment to moment. And over the years I have collected these faces full of emotion, like a collage in my mind.

The face of my daughters cardiologist as he comes to update me, its his bad face, the face that says "what is happening in there is not good". His eyes are like black holes, lips pursed downwards in this half frown that is the most frightening face I have ever seen. He didn't need to speak. I knew what he was going to say "She's bleeding, he can't find the bleed."

The look on the face of the Mother sitting across the waiting area from me. She was listening. She heard. She saw. Her eyes perky, her ears almost jutting out from the side of her head, eavesdropping. I watched as her eavesdropping turned into fear. Her eyes squished like she had been sprayed with lemon juice in them, and her cheeks became pale. The face of fear. Fear for me, and fear for her child.

That same Mother's face turned to overabundant joy as her child's doctor came out, with a bubbly walk, and a smile, as she was updated that all had went well. She would see her child soon. Her eyes became bright again. Blue like the ocean. Her cheeks red with blood. Her lips in a smile for the ages.

Not only have I collected faces from that day, I have collected faces for the past decade.

The face of my dear friend, as she watched my 8 year old daughter take the pain of an IV insertion, with no tears, no fear. Her face was in wonder. Eyes big, ears perked. leaning over the bed, mouth agape in wonder at the amazement of strength of this child. Then shame as she felt bad for feeling sorry for herself in her own chronic medical condition. I felt horrible that she felt that shame. To me my child and her are one in the same. They both exhibit strength and fortitude in the face of incredible pain. I look up to both of them.

The face of the nurse in the room across from us as a code was called on a 3 month old baby. She was dripping tears, but attempting to stay strong. Her eyes were like swirls of energy, emotion. The red flush of adrenaline as she squeezed the bag around the baby's mouth in between chest compressions.

When I think back on this medical journey. this story of medicine, I see faces.

Faces of clinicians, nurses, administrators.

I remember the face of a CEO of a hospital as he said "People are leaving this facility to get care out of state, because we can't give them what they need". His downward lips almost hissed the words. The shame and embarrassment as he spoke oozed out of his eyes. I swear his entire head of hair turned gray in that one sentence.

In the world of medicine, I see faces. Faces of humans. Humans being. Humans working, living, dying, crying, laughing. Screaming. Existing in agony. Dark circles and bald heads. Faces. Faces of sadness and happiness.

Faces with cannula's on them. Eyes red with pain. An older gentlemen as he comforts his wife and assures her he is okay. And he's the one in the hospital bed.

The face of my Father, as he pats his first granddaughter on her head as she is hooked up to a ventilator, with chest tubes full of blood coming out of her, and a fresh zipper scar to be proud of. My Daddy never cries. Here I see his blue eyes well with tears. The grey hairs in his mustache trembling as his upper lip quivers in emotional pain.

The face of a emergency room pediatrician who was in awe of how I had learned to manage my daughters care. His eyes large. Pushing back in his chair, as he shook his head at the complexity and exhaustion he must think I felt. He was right. There was exhaustion. His face lightened when I said she would turn 9 this July. His lips smiled and his cheeks turned pink with happiness.

Its our faces, our human faces that give us away. It's in these moments, these moments of collaboration, of desperation, of living, and even of dying that we learn what it means to be human.

And the world of medicine is filled with all of them. Every emotion, every frown, every smile, every tear, every IV insertion, the human is there.

The human is there when that code is called. That face of the resident doctor who had to call his first time of death. The withdrawn look he has as he looks at the wall clock. Eyes falling deeper into his head, lips in a grimace. His face shows his humanity. His face. Its in the face we see the medicine. Its in the face we see the work.

So I collect these faces. I replay them from time to time. Searching them for visions of what it means to be human.

The world of health care, the world of medicine, is the art of humanity. It is the respecter of life. It is the preservation of life.

I collect these faces.

I am the Face Collector. And I am human.