It was 2 years ago today that Leah got her current shunt. You can read all about our first shunt experience, which seems so far away now. Even though it's a distant memory, the topic of her shunt is one that I think about on a fairly regular basis. It's brought up in casual settings, like when I'm combing her hair and I can see and feel it. I think about it anytime she seems a little off, whether she's a bit distracted or tired, or overly cranky. Anytime she pukes, it's the first thing that comes to mind (which thankfully, hasn't been an issue lately - but she does have an overactive gag reflex, so it's more common that you may think. ((PS, someday I'll have to share the story about my birthday dinner)). )
Her shunt is an important part of her life, it's a necessary evil, if you will. It keeps her alive and functioning like a normal 3-year old, but it also has no mercy and can stop working at any time. The most talked about topics among any SB parents are shunts and bathroom programs... and ironically enough they are both shitty topics.
How do we monitor her shunt? In the beginning, she was getting regular head exams to see if her ventricles were still the same size. For the first 18 months before her soft spot filled in, we could do that with a simple ultrasound. It was a bit gooey, but very simple. After that, we had to spend 5-10 horrific minutes strapping her into a machine to take X-rays or CT scan or a rapid MRI. OH.MY.GOD. If you ever think 5 minutes goes by fast, you haven't sang Twinkle Twinkle or the ABC's over the deafening screams of a toddler plus the whirling and whooshing sounds of an MRI machine. Those scans are then read by Pete and Dr. Nagib and Dr. Marker to make sure they look how they should. Pete is able to bring them up on the computer, and he can clearly show us how they look compared to last time. At first I was totally pretending that I knew what I was looking at when it just looked like a big blob. Now, though, I can actually make out the ventricles and see pockets of fluid. Her ventricles will always be a little bigger than normal, but what's important is that she is able to handle that little bit of extra pressure, and it has just become normal to her.
What is the shunt doing? Well, the shunt is draining out the excess spinal fluid out of her head. Everyone produces spinal fluid that surrounds the brain and carries messages throughout the body. In a normally functioning person, that fluid is able to go down the spinal cord and into the body. Leah's spinal cord is broken, so creates a dam and the fluid backs up into her brain. Think thawing rivers when downstream is still frozen. There's nowhere for all that fluid to go, so it causes severe brain damage. The shunt can detect when the fluid is getting too high, and signals the valve to open and diverts the fluid down the tubing into her abdomen.
When do shunts fail? Whenever they damn well want to! Seriously, I have no idea. They do because they do. And they work because they work. Luck? Prayers? Skilled surgeons? Yes? no? ... or maybe something else altogether. We just don't know. We are fortunate that in almost all cases a shunt failure isn't an emergency. In fact, most shunt failures happen over a long period of time when signs are very faint, and over time become more apparent... and then you look back and think, oh so that's what was going on!
When I think about 2 years ago, it seems far away, but it will never escape me that we could be right back there at a moment's notice. I wouldn't say I think about it all the time, but whenever I see a call from daycare, or notice that she's acting weird, or just think that we've had a little bit of good luck lately, I get that feeling like it's going to happen again. This shunt, it causes me a lot of headaches, but it prevents them in Leah. I suppose that's a fair trade-off.
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