Today I woke up late. No surprise there. We had a scheduled appointment for Kai to have an MRI, so we couldn’t be late. The morning was a whirlwind getting Kai fed, showering, packing a hospital bag (aka all the things to entertain Kai while waiting), making my coffee and rushing out the door. Thank goodness Danny was around to help! We made our way to Nationwide Children’s… that’s nothing new. I could drive there with my eyes closed at this point. I have a moment when arriving that I ask myself, “Okay, where are we headed today?” MRI. That means Crossroads registration. That means park in either garage, I usually pick blue. Park, get the stroller out (because it’s a long walk), pack Kai up and head there. Once we are there, it’s check in at the kiosk, get his ankle band, head back to the second registration desk. Complete all the paperwork… does he have any metal in his body, do I have any metal in my body… blah, blah, blah. Has he had any cough, vomiting or diarrhea in the last 24 hours? Has he or anyone in the home traveled outside of the US in the past few months? Has he been exposed to TB, Pertussis, Measles or Mumps? Why do I have these things memorized? Oh… I know why… because I’m asked them every week – multiple times per week. This is my life now.
Listen, I am NOT complaining. I am blessed. I have a good life. I love my son and my family very much and wouldn’t trade him for the world. But why? Why is this my life? But more importantly, I try really hard to understand why God chose KAI. Why him? You see… just when we think we have things figured out, we don’t. Just as we finally get into a rhythm and we think things might be reaching some sort of normalcy, something happens. Just as we are starting to make progress, although slow, in therapies, he gets a new diagnosis. A new obstacle has to be overcome, a new medication taken and begins a whole new adjustment period. We are never settled.
I guess you could look at life like this in a positive light saying, “things never get boring”. And well, that is so very true. But it’s not the kind of excitement I’d prefer. I don’t want any of this to be at the expense of our son. This sweet, innocent little boy who has no clue. He doesn’t understand and some days, I worry if he ever will be able to comprehend what he’s going through. You see, just last month, Kai had his first shunt revision. Well, that’s an entirely new story and I have so much to catch up on. But this was his first brain surgery since his shunt was placed on day two of his life. It was scary but he recovered really well and we were hopeful that the surgery fixed the problem.
Not long after, less than a month, we end up back in the hospital for new seizure activity. We later learn that these episodes are not typical seizures and called “infantile spasms”. They are treated with a VERY high dose steroid. At that point, we get to go home on this new medication. Of course, this throws everything out of whack. Our poor Kai is swollen from the steroid, irritable and all around miserable. And I can’t blame him. But as if that wasn’t enough, we rush into his scheduled MRI this morning. It’s just a “check up” after his shunt surgery. Meant to be a “just to be safe” appointment. Not hours after the MRI, we get a call from one of his neurosurgeons saying that Kai’s ventricles are enlarged. What does that mean for Kai?
We all have ventricles and they constantly circulate spinal fluid throughout them in our bodies. Kai’s ventricles are not properly shaped and his shunt drains fluid for him, not his ventricle circulating it, like yours or mine does. When a ventricle is enlarged for him, that means the shunt isn’t draining enough so more fluid is building up in the ventricle, possibly indicating a shunt malfunction. Never settled. The hardest part about all of this in this moment, there are still no answers. Our options at this point are collect some fluid via needle around the ventricle and test it for infection, exploratory surgery or WAIT. Ugh… what kind of options are those!? And let me mention, since Kai is on such a high dose steroid and immune suppressed, going into surgery or putting needles into his head probably aren’t the safest things to do. So, we chose nothing. For now.
So, I lay here in bed. Knowing that my child’s shunt might not be working properly. Knowing that I better not get too comfortable. Sadly, it just feels like a ticking time bomb. Never knowing when it’s going to go off. Will he make it to his next MRI? When is our next inevitable hospital stay going to be? It’s hard to live in this land of limbo. It’s hard to be in this unknown but I also know that we aren’t alone in never being settled.