Opening the door to our dormer attic, I see the boxes labeled “Erica’s medical records.” Crutches, a walker, and an IV pole to my left, I move boxes and plastic tubs filled with old greeting cards, wound care medical supplies, bygone writings from my PR career, and my husband’s mementos that include a Sylvester Stallone arm wrestling doll. (Yes, that’s a real thing.)
I peel back the packing tape on the cardboard box and find a stack of magazines on top. I shuffle the insides. Then…there they are! The spiral-bound notebooks that held nearly every detail from our “alternate universe” hospital life seven years ago. Pages beginning to crisp and yellow, I read over the records, reliving what my body endured in a sort of out-of-body experience.
My husband Steve’s first notes were of a typical labor induction. My blood pressure was getting too high, and doctors decided it was time to meet our baby boy, Reed. So mundane were my hubby’s records – on a loose piece of white printer paper – that his work to-dos were scribbled on the back. Little did we know how small these things would become over the next few weeks.
When Reed’s heart rate dropped dramatically, doctors rushed me in for a c-section, discovering something terribly wrong with my insides. Thirteen-year-old scar tissue (from a ruptured colon in my 20s) was adhering my organs together in my abdomen. My intestines were dying. Finding my uterus to get the baby out was a maze.
Surgeons eventually extracted our son out safely, and I got to hear his first cries and see his little face. I was still unaware of the emergency happening below the privacy sheet. Steve was ushered out of the room. The oncology surgeon was called in because he was the most skilled and precise. I fell into a deep sleep, from anesthesia or passing out or both. For hours, doctors removed feet of dead intestines and colon and worked furiously to try to stop my bleeding.
Taking Charge by Taking Notes
That first night, Steve faced the possibility of parenting our newborn son alone. Once I survived the monumental blood loss and surgery, we were met with daunting new challenges.
Managing my health became a full-time job for him in those initial weeks. Steve went to task, working his way toward Baldwin Employee of the Year in my book, taking detailed notes. His intense nature and painstaking record keeping meant we didn’t have to rely on our memories or medical charts – we had a real-time record at our fingertips.
Sleeping in hospital recliners and makeshift beds, Steve would not leave my bedside. He took note of every nurse, doctor, CNA, and visitor who entered my room. Escorting the transport teams around the hospital labyrinth to my countless scans, he stayed as close as staff would allow. He paid attention and ensured the healthcare professionals were, too.
Two days after our son’s birth, for example? “1:40 pm – removed breathing tube. Erica much happier”
Every single day, the journaling continued.
-21 units of blood given the first night
-Hematocrit, hemoglobin, blood levels
-Lasix to drain painful fluid from my body
-Multiple aneurysms discovered
-NG tube placed back in (a wretched tube placed in your nose to access your stomach)
-Tests and scans, what kind of test, how long I was gone
-Checks of my drains and stitches on my abdomen
-Introductions to countless new teams of doctors
A week after our son was born – the first suspicions of my “abnormal connective tissue” start to surface. Genetics and vascular doctors get involved. Eight days after my c-section, IV nutrition begins because my intestines weren’t fully healed. The diagnosis comes – Vascular Ehlers-Danlos Syndrome. Our lives are changed and so is the path of my treatment plan.
Some days the notes are pages long – outlining every conversation, even the impossible ones, like this:
Nov. 12, 2011 – Our baby is 10 days old. Doctors insist we wait on surgery on the growing aneurysm in an artery that is feeding my brain because my body is too weak. Steve writes: “Body needs more nutrition. Spend time together with Reed. Risk of stroke/bleeding. Too risky to treat now. Could bleed to death.”
Love Between the Lines
Nurses and MDs asked Steve if he was in healthcare or an engineer because of his attention to detail. No, we chuckled. His diligence probably made some of them uncomfortable, but Steve was not going to let any oversights happen to me on his watch. And keeping track of the ever-changing landscape helped us feel in control of something.
What the notebooks don’t represent are the countless hours of Steve’s hand holding, head down pleading to God on my behalf. Rubbing my feet. Getting me a cold compress for my forehead. Gingerly squeezing onto my bedside or at the foot of my bed to help me feel his closeness.
His gentle encouragement to sit up in a chair, take a walk around the hospital floor (with all my wires and tubes), or feed our son his bottle to help me bond with him. Steve’s insistence that doctors make a plan, have an answer, point us to the right specialist who could help me. His communication to family members and friends to post updates online.
We learned to live in each moment. To appreciate the small gifts, many of which were also recorded in the notebooks:
-The hours our sweet, healthy baby was in the room with us
-The day he was dressed in his first non-hospital outfit
-Steve changing his first diaper ever
-The names of church family driving an hour to see us and squeeze in a visit in between tests, naps, and rounds – some even staying the night at the hospital with us
– Family flying from the Midwest, not leaving our side
-Other family members’ handwriting in the notebook when Steve took a rare break – though not nearly as exhaustive as his notes
The notebooks also don’t reflect the time we spent urging Steve to go to the hospital cafeteria before they closed to get his beloved spaghetti because he feared he’d miss doctors’ rounds. (I was too sick and sensitive to smells for him to eat in my room.)
I napped often, exhausted from trying to gain strength. Opening my eyes, it brought me great comfort to see Steve there with his notebook.
Words of Affirmation
These notebooks were an almost-daily companion for nearly a year of our lives. My husband, a self-professing non-empath with less-than-stellar nurturing skills (according to him), loved me well during those dark days.
Don’t be deceived – Steve and I are not a perfect couple. When not in crisis mode, we let the little things upset us. Daily life, pride, and frustrations creep in. We ask for and offer forgiveness often.
But as I think back to Valentine’s Day 2012 – spent in the Neuro ICU of Johns Hopkins Hospital – I am ever so thankful for those college-lined declarations of his love for me. They are better than any romantic gesture or sentiment Hallmark could offer. Happy Valentine’s Day, Steve. I love you.