Living Hydro: One Family’s Journey

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By Melenie Dailey, Charlotte Hydrocephalus Association WALK Co-Chair

Olivia teen with hydrocephalusLiving hydro”…it’s a term my family uses. The three of us have been “living hydro” for almost 16 years.  Our beautiful Olivia was born at 25 weeks— 1 pound, 8 ounces of sass and determination! My husband, Tim, and I were absolutely thrilled that our very early baby girl was so healthy! At one week, they discovered that she had a Grade 1 IVH (intraventricular hemorrhage). The neurosurgeon told us not to worry– in close to 30 years he never saw a Grade 1 need intervention.  “They always resolve.” 48 hours later, they placed a temporary shunt in.  At one month, she received two ventricular peritoneal shunts. We found out she also had congenital, non-communicative hydrocephalus.  She was diagnosed with mild cerebral palsy, ROP and eventually ADHD with anxiety. She came home at 3 months weighing 4 pounds, 2 ounces.  “Living hydro” was beautiful with our precious baby.

We considered ourselves extraordinarily blessed–“living hydro” was not difficult. She had one revision at 23 months for a malfunction and then went eight years with no surgery.  She excelled in everything she did. As she hit puberty we saw an increase in malfunctions, but she didn’t miss a beat.  “Living hydro” just meant the occasional blip on her radar and mom carrying headache meds, just in case. Middle high school brought many adventures–travel, vacations, and extracurricular activities. I was glad she could enjoy being a typical teenager, even though hydrocephalus would occasionally rear its ugly head.

High school. The beginning of the school year was a promising time. So many things planned and anticipated– she looked forward to turning 15, getting her license and dating.  Even though she had a her 12th shunt surgery on September 15th, she was at the 2015 Charlotte Hydrocephalus Walk, passing out WALK shirts, helping with raffle baskets and advocating for the hydro community two weeks later!

October was the start of our challenging period. “Living hydro” was beginning to steal significant moments– birthdays, holidays, and parties. We were dealing with the impact of a brain full of slit ventricle, non-compliant, non-communicative ventricles.  Two days after Christmas, we found ourselves back in the hospital–her white count was high, so her shunt was externalized.  By January 23rd, she was finally discharged. “Living hydro” now meant working double time in school to get caught up. But, she successfully caught up at the end of February.

By March 1st, Olivia was in emergency room– barely able to walk, or stay conscious.  It didn’t take long to verify that she had another malfunction.  With the accumulating choroid plexus causing a malfunction, she would need her 17th revision. This time, she didn’t bounce back quickly. She was ill, suffered from intense pains, and had a seizure. Her condition worsened dramatically. “Living hydro” became our worst nightmare. She was taken to the ICU and we were told she had an infection. The uncertainty of whether she’d survive was unbearable. We spent over 87 days in the hospital experiencing almost EVERYTHING that could go wrong. But, with the support of family and friends, were determined to fight. “Living hydro” meant persevering and my family was determined to beat the odds.

By August, we were cautiously optimistic. For the first time in almost 6 months, Olivia walked without assistance during physical therapy and was responding well to her memory therapy exercises. She was growing and getting stronger! Her spirit, determination and progress baffled the medical team.  “Living hydro” means constantly adapting and growing.

School has started.  The first day is a reminder of our current reality—she won’t be going back until she’s stronger. But, we’re hoping for an October start. Tonight, she sits beside me on the couch, watching her favorite TV show.  She looks over at me with her beautiful gray eyes smiling as she enjoys the show’s subtle joke, feet propped on her walker, reading from her tablet at the same time. I feel hope and another slight shift towards normal.

We’re gearing up for tomorrow’s Charlotte Hydrocephalus Walk.  Olivia is excited to share her story and remind participants of the need for continued funding for research and a cure. She intends to walk with her team and volunteer at the t-shirt distribution tent. I intend to thank every participant and donor in attendance. I’ll try not get emotional, but I can’t make any promises. We’ve come a long way and this journey has given us a new prospective on life. “Living hydro” means living every healthy day with inexpressible gratitude.

 

 

 

 

 

 

 

 

 

 

 

 

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