Wednesday, October 26, 2011

Angel Unaware

Every once in a while you read a book that touches you so deeply it becomes a part of you. When I was young, my mother shared, Angel Unaware by Dale Evans Rogers. A beautiful tribute to a child who was here only a short time, but who forever touched the lives of her parents, Roy Rogers and Dale Evans Rogers and other special needs children, for which they were eternally grateful.

Our daughter had her own little angel unaware. He came on four legs, not two, but an angel nonetheless. This summer she cared for a super sweet bearded dragon lizard named Paco. She fell in love and began saving for her own lizard and tank. When we learned the seriousness of Olivia's brain and spinal cord issues, our family and dear friends moved forward with the dream.

In our family, we believe our pets chose us. Marley, our beloved Border Collie, a rescue, didn't want to leave when he first met the girls. When our daughter walked to the aquarium where the lizard was housed, he came over and stood on two legs at the side of the tank and looked inquisitively at her. She walked around the store to look for things she would need and when she came back, he was waiting. It was love at first sight for both. We brought him home, much to the joy of all. Little Tuko, nicknamed Taco to rhyme with Paco, helped our daughter immensely in the days leading up to her surgery.

He had not been home long before he developed a bacterial infection in his mouth. The vet noticed signs of metabolic bone disease, unusual for one so young. She suspected his mother had been calcium deficient and he was born with it. A bit of irony as it was one of the diseases our own daughter had been born with. The Lyme disease caused placental complications, resulting in severe intrauterine growth retardation and metabolic bone disease. At six months, she was diagnosed with severe rickets, a vitamin D deficiency. We felt even more empathy for Taco.

Sadly, a secondary respiratory infection developed and his condition worsened. He rallied to join our daughter when she returned to school for the first time after her surgery. He erased the physical pain of her incisions and the emotional worry of her hair. Taco had been a star in the class's get well cards and it was very important to our daughter that they get the chance to meet him. Last night he quietly passed away.

As my heart was breaking for my daughters, our youngest, so wisely reminded me of a line from one of her beloved books Houdini Was written by the second grade students of White Bluffs Elementary in Richmond, WA after their class hamster died. "Don't cry that it's happy that it happened."

So I wiped my tears. Thank you, little Taco, for making some very difficult days so very special.

Wednesday, October 19, 2011

How do you know?

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!"