Logan, 9

“I just got off the phone with the neurosurgeon and we’re going to be admitting Logan into the pediatric ICU immediately.”

It’s been over four years since I heard those words and yet I still hear them so clearly. Neurosurgeon. Pediatric ICU. Immediately. Those key words shook me. I felt my knees buckle. I dropped my purse and sat back in the chair I had been occupying.

Just five hours earlier, I brought my 5 year old son, Logan, to the Children’s Hospital emergency room. He had a headache, his head felt numb, and he couldn’t see. His words, not mine. Yet, he was acting like a normal five year old. I almost expected the doctor to check him over and tell me he was good to go. I never expected those words. Neurosurgeon. Pediatric ICU. Immediately.

In the two years leading up to that moment, Logan often complained of headaches. And countless times we discussed it with his pediatrician. We were told allergies were the likely culprit. So we watched what he ate. We paid attention to the seasons. We looked at how he reacted around animals. But his headaches came and went as they pleased. They didn’t slow him down, though. He was a very active little boy.

As we neared that life changing day, Logan experienced something new. Seizures. Not the crazy, scare your mom half to death kind but still something worth noticing: petty mal seizures. In mid sentence he just stopped and stared off into space. When he came to, he began speaking complete gibberish. No real words could be deciphered. But within a minute, his speaking took shape and words were formed. We headed off to see his pediatrician when this happened twice in one day. Although rare in children, she suspected complex migraines. She referred us to a neurologist so an EEG could be performed. Within a week, on April 10, 2013, Logan’s brain wave activity was checked. He was hooked up to a bunch of wires. As hard as it was to see my little boy like that, it was a painless procedure and within an hour, over. I had hoped it would provide us with some answers. In the end, his brain wave activity appeared normal. We were essentially back to the drawing board.

Two days later, on April 12, 2013, when he complained of another headache, I was unsure of what to do. It was Friday at 5:00 in the evening. The doctor’s office was closed. My options were limited: urgent care, ER, or treat the headache at home and hope for the best. I decided to call the nurse line for some advice. I felt urgent care would be a waste of time but wasn’t positive if the ER was the right route to take. It seemed too extreme. While I was on hold, Logan explained to me that his head felt cold on the inside and he didn’t know where he was. Taken aback by this new information, I pressed for more. What did he mean he didn’t know where he was? And so I asked for clarification. His answer had me hanging up the phone and us driving off to the emergency room. He didn’t know where he was because he couldn’t see.

Hydrocephalus. The Emergency Room doctor took me to another room and explained it. She showed me a CT scan of what normal brain ventricles looked like and then showed me Logan’s. The difference was scary. I was told he wasn’t born with it. Then how did this happen? I remember the fear setting in when she explained how people acquire it: traumatic brain injury, a serious infection or a mass growing in the brain. Logan was never sick and he had never experienced any injury to his head. Determining if it was a tumor or cyst causing his Hydrocephalus meant an MRI the next morning. That night was the longest night of my life. Thankfully, the MRI showed no abnormal growths. In the end, we had no answer to what caused Logan’s acquired Hydrocephalus but it didn’t matter. He stayed in the PICU until Monday, April 15, 2013, when he was wheeled into the OR. A shunt and shunt assist were implanted.

Unfortunately, Logan remained symptomatic and showed signs of shunt malfunction just a few months later. And so, on October 24th 2013, Logan underwent a shunt revision.

Over the course of the next three years, we spent countless hours with occupational and speech therapists. He was diagnosed with clinical depression and spent over a year seeing a psychologist. Logan qualified for an IEP at school. He was tested but thankfully his scores were above average. His math scores were even off the charts. He does have a 504 plan in place, though, in case he ever has needs that need to be addressed at school.

Logan now wears glasses because of his acquired Hydrocephalus. The excess CSF compressed his optic nerves. His vision went from 20/20 at the pediatrician’s office during that first week of April 2013 to 20/60 on April 16 when he saw an ophthalmologist. We spent months attempting to repair his vision. Over time the swelling of his optic nerves dissipated and his 20/20 vision returned in his right eye. His left eye was stubborn. Every day we had to put drops in his right eye to dilate the pupil and blur the vision, forcing the left eye to work harder. After 18 months, his vision was 20/30 in his left eye! We added eye patching along with the drops and within six months his left eye improved to 20/25.

Just a week shy from his 3rd anniversary of his last revision, he showed signs of shunt malfunction. A shunt series x-ray showed the distal end of his catheter had broke. The cerebral spinal fluid was backing up into his brain. The next day, on October 18, 2016, he underwent his third operation.

The week of March 27, 2017, was spring break. We had planned a family trip to Wisconsin Dells, for a few days of indoor water park fun. Unfortunately, Logan started showing signs of shunt failure. Aside from a bad headache, he complained of a numbing sensation. He was stumbling and his pupils “danced.” After tapping the shunt, it was determined that Logan’s shunt had failed. And so we canceled our trip and spent spring break in the hospital. On March 30, Logan underwent his 4th brain surgery.

Today Logan is doing well. He’s still an extremely active boy. He’s nine and growing like a weed. He has good days and bad days but we handle the bad days as needed. He’s a blessing and truly an inspiration. As a matter of fact, Logan ran a wildly popular local 5k race just 10 days after his last brain surgery. Thousands of people were there to to witness him run nonstop with a message on his back raising awareness for Hydrocephalus. He was cheered on, high fived and fist bumped for his effort by hundreds of other runners. He was even interviewed by the MC after the race.

Hydrocephalus has changed our lives but it’s made all of us stronger and inspired us to do more. Logan can do anything he puts his mind to and Hydrocephalus will not stop him.

Logan EEG

EEG

Logan April 15, 2013 after his first brain surgery

April 15, 2013 after his first brain surgery

Logan October 25, 2013 - one day after his second brain surgery

October 25, 2013 – one day after his second brain surgery

Logan Just out of surgery on March 30, 2017

Just out of surgery on March 30, 2017

10 days after brain surgery – running a 5k race and raising awareness!

Logan with his sister last month. He loves getting dressed up for picture day.

A broken heel won’t stop Logan from attending the Hydrocephalus Association’s annual Walk!

 

Tell us about your journey with hydrocephalus!

Hydrocephalus affects each of us differently. Share your story with us! We will feature the amazing individuals in our community on our website and through social media.

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

If you would like to share your story, please email it to: ines@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.

 

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