Tuesday, May 3, 2016

Day 3: Hydrocepha-what??

Tillery's brain tumor caused her to also have hydrocephalus, which is a buildup of fluid in the ventricles in the brain. As her tumor grew, these fluid pockets formed. Following her first surgery to remove tumor, we were told they were only able to take about 10% of the tumor. The real relief came when a VP shunt was placed a few days later to drain the excess fluid off her brain. Tillery's shunt is a valve in the back of her head that has tubing that runs behind her ear and drains down into her abdomen. This takes pressure off of her brain.


In addition to draining fluid daily to regulate the pressure in her head, the shunt has also helped in emergency situations. The shunt saved her life in November 2014, when she fell and had a brain bleed, as it was able to relieve some of the extra pressure in her head.

The down side of the shunt is that it is easily infected and can have malfunctions or fail. In January 2015, we were planning to have a surgery to replace her bone flap but instead, had to use the OR time to replace her shunt that had rubbed a raw spot on the back of her head and was feared that it could become exposed. Last fall, Tillery spent 8 weeks in the hospital for a fungal infection in her shunt that had travelled through the tubing and was present in both her brain and her abdomen. In that case, a cyst of CSF (cerebral spinal fluid) had formed at the base of her shunt in her abdomen and was putting pressure on other organs including her stomach, which could no longer expand for food. In all, Tillery has had 6 shunt related surgeries.

This small device, even with all it's risks, is life saving. Tillery's hydrocephalus is very mild but we know many children with severe cases who heavily rely on their shunt to be constantly at work. Shout out to our hydrocephalus heroes, who have overcome many obstacles and surprised many doctors with all they have done - Mia, Xavier, and Khloe, who now resides in Heaven and the hearts of her amazing mamas.

Below pics are: Visual of a shunt, Tillery following her first shunt placement, Tillery being airlifted to Cincinnati for a shunt infection, Tillery with an EVD (which was an external valve that replaced the shunt during the time she had her infection)








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