|Aunt Melissa met us for breakfast in the Cook's cafeteria after our 8 am appointment this morning.|
I didn't put much effort into this post, so I'm sorry in advance for how poorly written it is. I'm just too tired to try very hard to assort my thoughts into a pleasing order.
When we scheduled the MRI for Hayes in August and expected to see our neurologist to discuss the results in the following November, we had no idea the events that would transpire that would lead us to meet with the doctor an entire month early. Never would we have expected the events that could occur within a matter of weeks.
So it happens that in the six weeks since the MRI, we have witnessed Hayes have countless seizures, visited the children's hospital five times, watched Hayes endure the EEG procedures four times, administered three different medications 94 times, missed a lot of days at work, and driven even more miles.
It. has. been. crazy, up. in. here.
Today, we finally met again with the neurologist who's been with Hayes since he was younger than six months old. He gave us a wealth of information, compassion, and comfort. We like him because he is straightforward in his discussion and treatment approach. We reviewed Hayes' MRI and EEG results, responses to medication thus far (we began ONFI last Friday night with good results, and began tapering off the steroid yesterday due to the undesirable side effects and the fact that he was still having seizures LIKE WHOA), and discussed the future (as far as the next few months). He (the doctor) ordered labs, an ambulatory EEG, planned for an upcoming spinal tap (to check for metabolic conditions that may be causing his underlying brain disorder), and answered our questions for over an hour.
|We'll be checking this EEG unit every hour or so for its blinking yellow light, which means the brainwaves are still being recorded.|
After being at Cook's rather longer than we'd planned, we brought Hayes home once again hooked up to his EEG gear. (An ambulatory EEG is completely mobile - we brought the whole EEG unit, which is about the size of a paperback novel - home with us.) We'll be monitoring his brain over the next 24 hours to assess how well the ONFI is actually working, and then Koby will return the EEG unit to Cook's tomorrow. If the medicine is not working as well as we'd hoped to stop the seizures, we'll increase the dosage and/or begin ACTH injections. The ACTH injections carry a less-than-attractive array of side-effects and risks, but prove effective quickly when most other medicines fail.
The reason we're treating these seizures so aggressively lies in the diagnosis that was added to Hayes' collection today: West Syndrome. This is a rare form of epilepsy that occurs primarily in infants (which is the only reason the epilepsy specialist did not attach this name to Hayes' seizures - but our neuro says, and I quote, "If it quacks like a duck...") and can occur for a variety of reasons, but generally leads to unfavorable long-term consequences if the seizures cannot be completely eradicated. If uncontrolled, Infantile Spasms can evolve into a lifelong epileptic condition called Lennox Gastaut Syndrome (LGS). (Please note that Hayes does not have a diagnosis of LGS right now.)
Even though this a brand new diagnosis, Koby and I aren't blindsided by any of the information we got today. The worst part of the day happened as Hayes was getting his EEG underway; the tech was testing all the connections and watching his brainwaves on the monitor and...
I think he had a seizure.
Total nightmarish feeling. Very, very bad feeling. Please pray with all your might that the little blip I saw on the computer screen, that the instantaneous flinch of his precious body was the LAST SEIZURE HE'LL EVER HAVE. I'd really appreciate it.
At the conclusion of our appointment this morning, our neurologist casually added, "Oh! And thanks for the blog."
Apparently, there is an employee whose job it is to scour the internet and social media for mentions of Cook Children's Hospital and see what's said... which gives me an idea. (It also gives me an idea for a serious career calling that I totally missed - this girl can Google ANYTHING. I've probably done two bachelor's degree's worth of research on Wikipedia.)
Hey, Cook Children's Hospital (a.k.a. Cook's, conveniently located in Fort Worth, Texas for your convenience), you know what would be awesome?! Why not start an EEG customer loyalty program? You know, BOGO offers? Punch cards? Frequent flyer miles? Just a thought... (Cook Children's. :-) )
|Peace out, dudes and dudettes.|