We are so grateful for this change. It's only been 30 days but it's huge in what have been some of the most troubling 5 months of our lives.
We sleep a little easier, we exhale, we laugh, we make plans and we celebrate every good moment we get.
So far…
Yes, this is all with some hesitation, as Cameron's neurosurgeon is not yet ready to claim victory over CVS, and call "IT" (aka the last 5 months of hell) all due to the shunt and slit ventricles.
Dr. Bowman wants 6-9 months out before really taking a deep breath and never uttering CVS again, unless of course you are talking about your neighborhood drug store. Once we get to 6 months we’ll consider stopping his daily medicine.
So this is only Mile One. But every mile counts.
Last week Cameron had an MRI and his ventricles remain stable from 9/10, which is good. Sometimes I forget as he grows older and is more aware of his surroundings; he might become fearful of these tests. The MRI tech was so kind and made sure he felt comfortable. If you've never had an MRI it's not for the faint of heart, the "tunnel" you enter is what I’d imagine being stuck in a coffin might be like, sorry I can’t come up with a better analogy, I don’t mean to be grim. The tech ceremoniously hands me two sets of little Styrofoam like green ear plugs and as if we are suiting up for space Cameron and I clog up our ears. I always hope he can at least hear me say “I’m right here” but if he can’t he can always see me and feels me touching his legs as they slide him into the spaceship.
After the MRI we saw Dr. Bowman, and she adjusted his shunt up to 2.5, just a slight move from 2.0, all in an attempt to keep his ventricles “full” instead of potentially slipping back into the very very tiny area.
This is all a guessing game trying to figure out if the ventricles had anything to do with the vomiting episodes. Ironic; hydrocephalus is defined has extra fluid on the brain (larger than normal ventricles) and while Cameron once fit this mold perfectly, now we want them to remain large? I swear this science of the brain stuff is something I don’t think anyone truly understands.
So now we wait, any signs of shunt malfunction or CVS episode will send us to Children’s for imagining to see how the ventricles look. But for now we are happy, and at home….a few bumps in the road upon return to school after surgery, our daily struggles with therapy and home frustrations, but that's a story for another day.
