Thursday, May 4, 2017

Mom and The Wiggles Save Kellisa (Spring 2003)

Kellisa doing her best to smile for her
school picture while suffering through
 her undiagnosed shunt infection.
Kellisa was slowly dying before our eyes and no one in the medical community was able to figure out what was wrong. 

Kellisa's smile and love of life were gone. She was battling high fevers for weeks. Nothing was bringing her temperature down to normal. She was seeing a doctor every few days and was in and out of the ER and hospitals without any relief. Once again, Kellisa was baffling the doctors. 

From early on, Lisa was convinced it was the shunt. After a CT Scan and MRI, we were assured that the shunt was fine. Kellisa's shunt had been in place for a long enough time that a shunt infection was very unlikely. The neurosurgeon didn’t want to tap the shunt to check the cerebral fluid for an infection because if it wasn’t infected, the procedure itself carried a 2% risk of infecting the shunt. 

One afternoon while Kellisa lay lifeless in a hospital bed, Lisa was changing the channels on the TV and stopped at The Wiggles. Kellisa immediately perked up and started to watch the four colorful singing and dancing grown men for the first time. This was her first sign of life in days. Once The Wiggles were over, Kellisa drifted back to a deep sleep. This pattern continued for days. Kellisa would use her minimal daily energy to watch The Wiggles.

Frustrated and desperate, Lisa demanded that the shunt be tapped. The neurosurgeon eventually agreed and I'm sure he just wanted Lisa to stop asking about the shunt. He stuck a needle into Kellisa’s head and pulled out some fluid. We could immediately tell by the look on the doctor’s face that it didn’t look good. His eyes literally jumped out of their sockets as he watched the cerebral fluid in the tube. Testing wasn’t necessary; he could tell the shunt was significantly infected by the amount of debris in the fluid. The neurosurgeon started preparing for emergency brain surgery.

Not comfortable with the doctor that ignored her request for weeks, Lisa insisted on having Kellisa transferred two hours away to our previous neurosurgeon in Orlando who performed the two most recent shunt revisions on Kellisa. 

By the end of the day, Kellisa was in a new hospital room in Orlando. We waited in the room to meet with the neurosurgeon and the three of us drifted off to much needed sleep without a plan. The neurosurgeon wouldn't schedule surgery until he could check Kellisa out for himself. 

At 4:30am, the neurosurgeon woke us up. He apologized and told us that he just got out of surgery. He reviewed the CT Scan and MRI. He told us how good everything looked and that he wanted to tap the shunt again because he had a hard time believing the shunt was infected. It didn't take long and despite the fact that he had already been up for close to 24 hours, he immediately scheduled the surgery.

Within an hour, Kellisa was wheeled away for the first of two shunt surgeries. The first removes the shunt and places an external shunt to drain the fluid while the infection is fought. Once cleared of the infection which usually takes about a week, the second surgery removes the external shunt and places a new shunt inside Kellisa's head. Each step along this process adds the risk of a new infection.

While Kellisa was gone for the first surgery, Lisa and I ate a quick breakfast before returning to the family waiting area. We nervously watched the clock as the expected length of the surgery came and went. Before we knew it, our update on how the surgery went was an hour over due. Fearing the worst because we knew this was more serious than her usual shunt surgeries, we were near panic when we still hadn't heard anything and it was now 90 minutes past when the surgery should have been completed.

Expecting the neurosurgeon to come out, we were surprised when a nurse called us to a private room. She started by telling us that it went well and that Kellisa was doing great. She then apologized for the delay, but explained that there had been a severe car accident and two children needed immediate brain surgery and Kellisa's doctor literally went from her surgery to start the others. We were told that he would talk to us as soon as he could.

The infection was wiped out without complications and the second surgery went perfect. Kellisa was back to her normal self in no time. 

Behind the scenes, Lisa, the mama bear saved Kellisa's life by fighting for what she knew in her heart and not blindly accepting answers that went against her instincts. I've been asked many times how I can tolerate the endless amount of The Wiggles in my life and I says it's easy because I will always be grateful for The Wiggles giving Kellisa something to live for when she needed it most.
Kellisa and mom at The Wiggles Concert
(Tampa, FL 2006)

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