Friday, June 4, 2021

Shunt Failure (Day 155)

As I write this, Lily is in the OR having emergency shunt revision surgery. 


I am writing this on my cell phone, in the same waiting room we were in less than 2 years ago. 

Lily threw up again this afternoon; and then again. Her vomiting was positional—meaning she stood up and vomited. The act of shifting position worsened the hydrocephalus in her brain. So, to the ER at CHOP we went.

Mike had been worried all week. I was worried all week. Lily has been worried all week. Chloe has been worried all week. All the symptoms were there; but they also could have been something else. But they weren’t.

Before I write more, I want to mention that Lily danced in her recital last night while in shunt failure. She swam this afternoon at swim team practice. 

She didn’t know. We didn’t know. Even though we suspected and were worried, I never thought we’d be here, again, so soon. 

But, Lily’s shunt failed and here we are, back where it all began and continues. I think the worst part of tonight has been the uncertainty. As we sat in her ER room, with the curtains and the sliding doors closed, I watched the footsteps go by. 

First, it was running footsteps, a code blue in another room. And for me, reminder of where we were: the place where hope is both irrational and essential.

Then, it was watching for Mike’s footsteps. He dropped us off to park the car. Then it was watching for nurses and doctors and orderlies taking Lily to her CT Scan.

And then, the worst of the footsteps, watching for the doctors to come in with the CT results. They came quickly and they sat down. 

It was when they sat down that I looked at Lily and she knew what it meant when they sat down. It meant the news was not to go home; but instead to wait for neurosurgery. 

The hardest part of all of this is that I cannot carry this burden for Lily. This is all hers. I can hold her. I can listen. I can talk. But this is hers to carry. It always has been and it always will be.

So tonight, my sweet, funny, strong, smart, tough, graceful, beautiful girl is in the operating room carrying the burden of having had a brain tumor and the blessing of survival. Please pray for her. Pray this latest event does not shake her determination or belief in good things. Pray for her healing. Pray for her life. 


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