Nearly One Year Later…

…my daughter and I ran across a worn (but purposefully forgotten) sheet of paper stuffed in the back of her small white desk in the corner of her bedroom. We were cleaning her desk in preparation for her return to school Tuesday (August 31, 2021) - a HUGE milestone (maybe the biggest) since September 16, 2020 or the last day she attended 6th grade.

It was the first documentation of our oldest daughter’s changed mental health. It was the first time I sat down and wrote. Life as we knew it was changing, matters were outside our control, and we were overwhelmed and terrified.

Today we are stronger than ever (but certainly still climbing). Our daughter is dancing again, she returns to school in a few days, I have started a business (finally brave enough to tackle my passion project) and we advocate for children’s mental health in partnership with community and healthcare leaders. We have been given a different perspective/new lease on life…an opportunity to make a difference for others that brave the same journey. Some might simply call it life.

I remember recounting the below in tears at our kitchen island nearly one year ago. Never could I have imagined the journey that would follow. I hope others might read the following and realize there is always hope, strength and beauty to be gleamed…even from some of the darkest or hardest moments in life.

October 13, 2020….I wrote…

I am a mother to a beautiful 11 year-old girl that suddenly experienced a panic attack at well-child check in anticipation of vaccines or shots that triggered a panic disorder/anxiety that changed our life forever.  I am documenting or telling our story in the hopes that others might take notice and our family might be a beacon to help increase awareness, support and compassion for children’s mental health.  Our story can happen to anyone.

And before I begin…I might paint a picture. My husband and I have been married for 12 years. We have three children, Finnley (3-year-old rescued retriever), 2 frogs and a fish.  We live in a beautiful home in Lake Elmo, MN where we love being close to family and friends while we enjoy the beauty and peace of the surrounding community.  Our oldest daughter has been an A-Student, plays clarinet, loves to read and write (having contributed to a school newsletter), loves to bake (especially with her grandma) and a dancer since she could walk.  Prior to the story below, our daughter presented no indications that she might be suffering from anxiety or on the verge of a panic disorder.  A beautiful, sensitive, caring, sweet girl – inside and out.  We (family, friends, neighbors and teachers) did not see the following coming.

On Wednesday, September 16, 2020 our oldest daughter started illustrating anxiety around vaccines she knew would be getting at her 11-year-old well-child check.  I struggled to get her out of the car and into the medical facility.  She was hesitant and in tears.  In the exam room she suddenly demonstrated symptoms of a panic attack – something I had never witnessed.  Butterflies in her stomach, dizziness, tingling in her hands and loss of feeling or weakness in arms and legs.  Our daughter did settle down and received her vaccines like a champ.

Thursday evening (9/17/20) our oldest called us from the restroom of her dance studio experiencing a panic attack. She was begging us to come get her immediately.  This was the first day we really considered something might be changed.  We contacted her pediatrician who recommended hydroxyzine and, if her symptoms did not improve by Monday, we should consider counseling.  Throughout the weekend her butterflies and dizziness continued. Our daughter became more and more anxious.  On Monday (9/19) we called to initiate a counselor…the soonest our daughter could connect with someone was Friday 9/23. By Tuesday (9/20) our oldest’s symptoms were significantly worse – seeing some anxious trembling, combative behavior and screaming.  We called a nurse who recommended we take her to Children’s.  Children’s ran a variety of tests/bloodwork.  Only red flag was irregular thyroid results, but not conclusive or significantly alarming.  They sent us home with a few doses of Ativan (Lorazepam) to control elevated panic attacks and recommended we see her pediatrician.  Social Worker recommended our daughter see a counselor immediately, but after four failed attempts to schedule appointments for that Wednesday (did not accept insurance and double-booked appointments), we hung tight to our Friday (9/23) pediatric appointment and time with the counselor scheduled earlier in the week.  Nothing was feeling like enough medical attention soon enough, but doing our best to navigate the system and a pharmacy that did not provide us the right amount of Ativan to effectively help our daughter.  Prescription was not filled correctly, but because we were dealing with a controlled substance, it took us hours to resolve.  So far, we were zero for two in our attempts to help our daughter.

On Friday (9/23) the pediatrician drew more blood for additional follow-up and started our daughter on Fluoxetine.  We completed her intake appointment with the counselor.  Anna’s symptoms continued to worsen.  Symptoms had migrated from butterflies in her stomach to feelings more relatable to a heart attack – chest pain, shortness of breath, increased dizziness, weakness in arms and legs.  Our oldest was beginning to become truly terrified and as a result increasingly frustrated, angry and combative.  She started to say things like “I cannot live like this.  Make it stop.  I will make it stop.  I want to be with our dog in Heaven.”  By Tuesday (9/29) her symptoms were so bad, we no longer felt our oldest daughter or our family was safe.  At the recommendation of the Washington County Crisis Hotline, we brought our daughter back to Children’s in St. Paul.  At Children’s she was deemed unsafe to be home and admitted.  Recommended by social worker (attending to the ER) that our daughter be medically cleared and transferred to an inpatient mental health hospital. 

Our oldest daughter spent 7 days in the hospital waiting for an inpatient mental health bed.  Every day her symptoms got worse while we waited.  The hospital stopped giving her Fluoxetine thinking it may have contributed to her suicidal thoughts.  The hospital attempted to show our daughter some coping mechanisms for her anxiety, but her ability to control or regulate her sensory system continued to degrade.  Only toward the end of our stay did hospital personnel agree tamping down or proactively treating her symptoms was necessary.  My husband and I fought for answers challenging medical personnel to over-turn every rock.  At our encouragement (after already medically clearing her), the doctor-on-call ordered a MRI, EEG, neurological exam and psychiatric exam.  Continuity of care and communication was an ongoing battle setting us back with every shift change until a weekend nurse (who became our hero) took it upon herself to assure all were operating as a team to support our daughter.  MRI and EEG were never completed after the neurological exam…cancelled after an IV was already inserted in our daughter’s hand in preparation for procedures.  IV was removed. Our frustration continued.

Our oldest daughter’s symptoms worsened throughout the weekend.  Panic attacks were lasting hours and symptoms never went away. She had ongoing feelings of dizziness, shortness of breath and chest pain. She went to sleep with them and woke up with them. My husband and I were desperate to get her out of there tapping relationships we had in Colorado to find her a mental health bed if there were simply none available in MN and surrounding states.  We were absolutely desperate.  In our daughter’s worse moments, she would be screaming, pounding walls and windows, on the floor crying, combative to those helping her and hitting herself.  At one point on Sunday (10/4) we were asked to leave the room because she was so bad sedation or restraint were being considered.  We made the hospital promise sedation before restraint by security guards.  My husband and I were at a loss and in tears. Our daughter desperately needed help. At one point she grabbed me and said, “Why are you all just looking at me?  Cannot you see I am really sick, scared and need help?  Why are you not helping me?  It feels like you are just putting a band-aid on it.  I am scared, mommy…I am so scared.  Am I going to die?  This feels like a nightmare and an out-of-body experience.  I am not myself.  Please help me!”

On Monday (10/5) we learned our daughter had been reviewed and approved for admission into PriarieCare’s In-Patient Mental Health Hospital in Brooklyn Park.  We cried and cried with joy.  We called family and friends and rejoiced.

But…what followed was equally as hard. We watched our daughter be strapped to a gurney to be transferred from Children’s to PrairieCare by ambulance.  We could not ride with her (liability reasons).  We understood legalities/risk…but as a parent with a sick and terrified child…it was also difficult to understand.  Our daughter with high anxiety and panic continued to be put in and through high stress situations with changing personnel.  We were unable to follow her and arrived at PraireCare after her.  She was accepted via patient intake and we walked through the front doors without our daughter.  We were asked to fill out paperwork in the lobby.  Then advised only one of us could see her.  A revelation that was unfathomable at the time due to our mental/emotional exhaustion.  I removed electronics on my person, walked through a metal detector and proceeded to be escorted down a long hallway by security.  Nothing about this experience felt comfortable.  I arrived on Turtle 2.  I was taken to room #8 on the right.  Door was unlocked by staff and I found my daughter alone in her hospital scrubs crying at the end of a bed in a room that felt like a sterile dorm room with frosted windows.  A stark contrast from our home that I was not personally (mentally/emotionally) prepared for.  I did not have the tools to parent through this.  Our daughter kept yelling, “You cannot leave me here, mommy.  Please do not leave me here.  Look – I cannot even see out the window.  Why am I here?” Not prepared for what I experienced or saw, I left the room to find my husband.  I listened to our daughter screaming for me the entire time I made my way to the elevator.  My husband’s experience was similar with our oldest chasing him out of the room and having to be escorted back to her room kicking and screaming.  Her reactions felt normal (she was scared).  Sadly, we never saw our daughter again that night.  We ran to Target and bought every fluffy/warm/fuzzy thing we could find and a card to assure she knew we loved her and did not abandon her.

It is Tuesday (10/13/20)…the day I write this letter.  Our daughter comes home from PrairieCare tomorrow or Wednesday (10/14).  It is the day before my birthday and the best gift a mom could ever hope for.  I wonder where we will be one year later…