Friday, October 21, 2011

How do you know?

posted by Lyme is real, a SpiroChicks contributor

How do you know a pediatric neurosurgeon loves his/her patients? When the dressings are cut away to reveal gauze cut in the shape of hearts!

Rewind to August. Two weeks before her ninth birthday, our daughter started having a rougher time. She had less patience, was easily agitated and had a more difficult time making eye contact. She noticed memory issues. School started and in her words, "Things that used to be easy are taking a lot longer and sometimes I can't even remember what to do."

Things like how to add or subtract.

We noticed a decline in fine motor skills, more confusion, increased cognitive difficulty, dizziness, queasiness, increased headaches, fatigue and falls.

A CAT scan provided the first clue, hydrocephalus in the third ventricle of the brain. An MRI revealed hydrocephalus in the third and lateral ventricles, a Chiari malformation and part of a syrinx in the spinal cord. An MRI of the spine revealed two syrinxes in the spinal cord. A pediatric neurosurgeon joined the team of amazing physicians spanning four children's hospitals who have helped her to be where she is today: endocrinologist, bone geneticist, infectious disease specialist, orthopedic surgeon, pediatric opthamologists, ENT, pulmonologist, pediatricians and now a neurosurgeon. Our daughter was born with cerebral Lyme disease. She was diagnosed three years ago, solving many of her medical mysteries, but leaving challenges still to be faced.

The neurosurgeon explained that the Chiari malformation or hydrocephalus triggered the remaining problems, but which came first? A chicken/egg scenario. Fortunately, early MRIs provided the answer. They were normal, ruling out the Chiari malformation as a birth defect. The hydrocephalus came first. One cause of hydrocephalus is an infection of the central nervous system. Chief suspect: Borrelia.

This week a V/P shunt was inserted into her brain. At the time of her surgery, her cerebrospinal pressure was extremely high. In the surgeon's words, "It was the real deal."

She has been through so much in her nine years and there have been countless instances where we have been in awe of her courage and determination. Other than a few tears in the recovery room, she hasn't cried. Not during physical therapy, not when she tries to get up or roll over. Her one complaint, "I didn't realize it would hurt everywhere."

When she was tiny, she announced after getting a nightly shot of growth hormone, "I am one tough cookie in my wonderwear!"

She still is! Revealed once again when those heart shaped dressings came off today. Hearts meant to ease the hurt. A gift from a gifted surgeon.

Today, her hand has cautiously slipped behind her ear, carefully exploring where her hair has been shaved. A few tears. In three months, repeat MRIs will determine whether more surgery is necessary. We pray not, but know chronic Lyme is a marathon. There will be more challenges ahead. For now, it is enough to take comfort and gather strength from being home. It is time to rest and heal.

In closing, unforgettable words of encouragement from a nurse who shared our joy in her first steps after surgery to explore the Children's Garden. "Look at you, Little O!"

Monday, October 17, 2011

Hospital Tales

By Candice, Spirochicks contributor 
Originally posted on Infectiously Optimistic 


Thursday evening, a thin partitioning sheet separated my gurney from the gurney just a foot from mine. My neighboring hospital bed was empty upon my admittance to the Emergency Department, but a few hours into my stay, I watched the shadow of a new patient settle in, and listened to the worried voice of their accompanying loved one, intermittently interrupted by the intrusive sounds of inflating blood pressure cuffs and beeping machines. As the triage nurse brushed by the curtain separating us, the sheet rippled as it caught the air of the nurse’s brisk wake, and for a fleeting moment I was able to harbor a glimpse of the two beside me. The patient laying in the hospital bed was a pale elderly woman, her silver-haired husband sitting in a chair by her side. As time elapsed, she was wheeled in and out of the area for a number of tests, her husband always shuffling in tow of her traveling bed. Eventually, the couple was visited by neurologist clad in a crisp white overcoat, who informed the elderly woman that she had suffered a small stroke. She had lost the use of one of her arms, but she’d be treated and monitored, and she’d be okay. The doctor proceeded to educate the couple about the further neurological testing that would be required and the rehabilitation that would ensue in the following weeks as they tried to help her regain her strength and the use of her impaired limb. I listened to the thick silence as the news sunk in. Finally, the woman replied:

“But how will I do my hair?”

I imagined that she was referring to her inability to use the arm that she naturally relied on. I listened for her husband’s response. To my surprise, I almost sensed a smile behind the tone of his voice. I watched the shadow of his raised hand as he lifted it to gently pat his wife on the top of the head.

“Oh honey, I’ll brush your hair. I’ll put your curlers in for you too.”

Now that's love.
Illness has a way of stripping life of glamor, glitz, and the nuances that blind us to what lays before us. Illness exposes weaknesses while unearthing strength, and reveals what is real and what was merely smoke and mirrors. It quakes a life until its cracks widen and what is feeble falls away, and leaves what is relentlessly real standing clearly in front of us. Living life with an illness has proven to be one of the truest ways to live and has blessed me with the opportunity to witness raw courage, true compassion, and authentic love. For that, I am grateful.