Shunt Failure & Revision

April 24-27 2022 (IG updates, because I just can’t write about it again, rn)

That dreaded purple mark … We were home from radiation for 4 days. 4 wonderful days. On Sunday, Kai woke up at 6am and was wrestling us all, trying to get us up. He had his morning milk and was laughing and playing.

All of a sudden, he started to cry and he threw up. Then he wouldn’t stop crying. VERY out of the norm, so we called the on call team and they advised to go directly to the ED at CHLA. We headed there and they did a fast MRI and CT to rule out the bad stuff.

Unfortunately, his ventricles were too enlarged, causing him pain and nausea. They are fairly certain that he’s had shunt failure. He’s had his shunt since Feb of last year. And it’s already not working.

They say this happens in 40% of the kiddos who have shunts. This is so heartbreaking. The trauma this all causes is life-changing. A breath of fresh air for our family, quickly turns and puts us back into darkness.

So, we are inpatient, waiting on an OR room to become available. They will cut into Kai’s head again, diagnose the issue and try to fix it.

Our brains contain CSF. It’s flushed and replenished 3 times a day. Our bodies do it automatically. Kai’s does not. Due to the trauma of his diagnosis and first tumor, this will be his reality. He will always need the shunt to do the work for his body. It flushes the CSF through a tube that is run into his tummy. You can clearly see his shunt on his head and the tube on his neck.

Our baby boy. We keep fighting because we have no choice.

He cries and begs for them to stop. Just about anytime they enter the room.

I’m completely broken for him.

All over again.

We love you, Kai. Endless.

It’s considered somewhat routine. Which just blows my mind.

*******

I will NEVER. Ever. Ever. Understand the pain you are being asked to endure. Or all the massive amounts of money our government spends, not going to research children’s cancers. All I can do is hold you tight while we both cry.

He started hitting and kicking me at the hospital this time. I get it. I would do the same. He now uses a “safe word” that we didn’t teach him. The child life specialist thinks it’s because he tries “no” and we don’t listen. So he says “Elmo?” In a sweet whiny voice over and over, wanting us to stop holding him down and hurting him.

It breaks me. Over and over. Relentless. It’s a constant.

I’m so so sorry baby boy. It’s not ok.

Please refrain from saying things are meant to be or it’s in a higher power’s hands (which I hear a lot). It’s too painful. Be kind with your comments. Be thoughtful with your words.

Our family has been living in a world of hurt for 15 months and it’s not meant to end any time soon. While we do our best to smile and thrive through it all, the pressures of everyday life weigh heavily on us. You can’t imagine how hard it is to continue functioning as if everything was ok when your world is spinning out of control. But we try, hard.

For those of you new to Kais fight, he was given a 10% chance of survival at 7 months of age. Truthfully, we’ve been very lucky to spend all this beautiful time with him. But it’s mainly been very very hard on him the entire time.

The many kiddos and families fighting like hell, deserve so much more.

All our love.