Getting Ready For The CMN Hospitals Dance A-thon

This post was submitted by Kaycie Paige for Children’s Miracle Network Hospitals through childrensmiraclenetworkhospitals.org/guest-post. 

Kaycie’s Story:

November 11 2014, our family of five grew with the addition of Kaycie Paige. She was born full term and completely healthy. At six weeks old, Kaycie suffered a major stroke caused by a cerebral hemorrhage and that night we put full trust in team of doctors we’d never met to perform brain surgery on our baby girl.

In that first surgery the goal was simple: Stop the bleed. To do so they had to relieve pressure by removing a portion of Kaycie’s skull which would allow her brain to decompress. The intention was to reattach the section they’d removed, at a later date with a 50/50 chance the body would reabsorb the skull. Our future seemed pretty bleak when the doctor told us if she makes it through the surgery and the next 48 hours, her quality of life would change forever.

Kaycie is our fighter. She survived the surgery and the critical few days after as well as the 2 month stay in the hospital. The odds stacked up against us when her body started to reabsorb the bone flap that was placed back in six months prior. From there, Kaycie was diagnosed with Hydrocephalus, which is an accumulation of excessive fluid around the brain.

Due to the extra fluid, an intraventricular shunt was inserted into Kaycie’s brain as well as a titanium plate to help reduce the excessive spinal fluid and cover the 45 percent deficit in her skull.

After the shunt was placed, and over the course of about seven months Kaycie began having episodes of severe headaches and vomiting, lasting days at a time.

All we knew was something was wrong. With several trips to the ER We didn’t Know how to ease her pain and discomfort and it was almost impossible to recreate the episodes she was having when we were in the doctor’s office or emergency room to identify a cause. In August we had plans to spend time in Austin for a family reunion. Little did we know, how that weekend would drastically change our journey.

We must have been needing a sign to tell us that Dell Children’s Medical Center is where we truly needed to be, because Kaycie had an episode while we were at our family reunion and we rushed her to the closest hospital. In that visit to the Emergency Room, where we were admitted for 5 days, Dr. Timothy George the Neurosurgeon on call, went above and beyond, taking the time to review ALL of Kaycie’s charts and history and in doing so, identified the cause we’d been almost hopelessly searching for. All whileloving on our Girl and Us. His bedside manner was one we had longed for in this horrible nightmare we had been living.

The titanium plate was restricting Kaycie’s skull growth and causing her brain to push against her skull. A second intraventricular shunt was inserted in the area where the stroke occurred, to buy us time to do a cranial vault expansion and ultimately reconstruction surgery by Dr. Raymond Harshbarger and his amazing team. To expand the plates in her skull, Kaycie grew “unicorn horns” that had to be turned twice every day to force the expansion. As we turned her Unicorn horns every daily, we’d sing happy birthday and only daddy was allowed to turn them. The expansion process did exactly what it needed to and despite having to watch the looks and stares from strangers, Kaycie was as strong and resilient as ever. Proudly showing her smile, her courageous spirit and her unicorn horns.

Kaycie is full of life, so much joy radiates from her little soul. She has defeated all odds. From crawling, to walking to running to riding her trike and using both hands. She is so proud of herself, just as we are. She is our walking, talking, PERFECT miracle!

Through all of this, our faith in God and his workings have stayed as resilient as Kaycie’s spirit, finding comfort in this bible verse that has been with us from the beginning. Exodus 14:14 – The Lord will fight for you; you need only to be still.

Today we are waiting and hoping that her skull will grow, regenerate and thicken so that again her own bone can be used to recreate her skull, where it’s been depleted. How well it grows, regenerates and thickens will determine how many more surgeries Kaycie will need.

One thing we do not have to hope for, is what kind of care we will receive as we continue our journey.