Appearances

And herein lies part two of letting your guard down, and that part is about Cameron. We recently got to a point where we did let our guard down regarding Cameron’s medical conditions. You never stop worrying, but I really felt as though we had finally hit our stride, he was healthy, he looked good, he loves school – what more could we ask for from our medical mystery boy?

If you saw Cameron on the street, even today with our new diagnosis of CVS, you might take a second glance only because he had his orthotics on, or without a shirt on could see his shunt tube going down his chest, but you’d never think this was a child with a host of medical conditions, some life-threatening, with no cure.

And it’s because he looks so good that I think sometimes people forget how sick he was, and quite frankly still is if you catch us on a certain day.

We let our guard down because of his outward appearance. Meanwhile inside parts of his anatomy are walking a thin tight rope where a fall could happen at any moment.
We took a fall last Thursday when he slipped into another CVS episode, unfortunately this one was different. He normally comes out after 12 hours, by hour 24 I wasn’t sure what was going on, so we made the call to GI. And off to Children’s we went, I even tried to convince them that he wasn’t dehydrated, they still wanted him in the ER.

Every time Cameron does so much as sneeze, cough or roll over in bed, we stop gripped by fear. Is he going to vomit? Once that happens I am done, I can’t properly explain the feeling but your whole body tenses up, your teeth are clenched and you don’t even realize it, it’s as if you are in a straight jacket of worry, playing out all the ‘What Ifs’

The reality is I can never let my guard down, ever. In fact I need to be more vigilant. I have to journal his daily activities, watch for signs of an episode or shunt malfunction, pause before telling him about any potentially “exciting” plans, try to figure out triggers, and then avoid them. I have to question if he can stay in camp this summer because it's been suggested too much fun could send him into an episode. Really?

I have to question every potential symptom this boy exhibits and consider a call to one of our many doctors, which could set us on another course to Children’s.

During our most recent stay there were SO many frustrations, but most troubling of all was the concern for the ventricles in his brain. They are small, not too small, yet. His neurosurgeon says he’s at increased risk for Slit Ventricle Syndrome especially based on the placement of his catheter. After the MRI of his ventricles on Thursday confirmed her suspicions I now know what she meant when she told me having “small ventricles is neither a good or bad thing, it just is”.

While on some level I was prepared for the day we’d be faced with a shunt malfunction, it never occurred to me that we could be dealt a NEW diagnosis, really how would that be possible? He already has enough going on, his medical record file at Children’s is the size of Webster’s Dictionary, no joke, I’ve seen it. For now we add Cyclic Vomiting Syndrome, and I sincerely pray and hope Slit Ventricle Syndrome is not in our future.

Isn’t there a quota, a cap, something that says it’s too much?

We let our guard down, because he looked so good. Today he looks good, he is happy, he is a lucky boy. Yesterday he was sick, very sick. Who knows what tomorrow holds. What’s that old saying…? “Appearances can be deceiving”