My post today was going to be about our fantastic Just Us Weekend, but then Collin's seizures started to get worse today, which took the wind out of my sails. After his second cluster of 20 spasms, which were noticeably stronger than the first set, I paged the neurologist on call at the children's hospital (who just happened to be Dr. Awesome) to figure out what to do with Collin's meds. Since we never got full seizure control on the prednisone, he decided to start the wean right away and wean over three weeks (we had delayed and lengthened weaning since Collin seemed to be doing so well). While we decrease the prednisone, we will give B6 one more try, and if that doesn't work, we're on to Vigabatrin.
Also in the news, our insurance company and the hospital that controls THE ONLY CHILDREN'S HOSPITAL IN THE CITY had another falling out. It was basically a big foot stomp in a colossal series of baby fits over money. Except that they dragged the children and families into their mess since their disagreement interferes with coverage by drastically increasing the amount for which families will be responsible. Luckily, it turns out that Kyle's company was somehow able to bypass all of this, but I spent a lot of the day being furious and writing my councilman, representative, and governor. Plus, what about all of those other families? The job of the hospital is to provide care and the job of the insurance company is to provide coverage, so why don't they do it? Parents of children with illnesses and other conditions have enough to worry about without dealing with the ridiculous power struggles of what basically amounts to big business.
There's a different kind of exhaustion that takes hold on days like these. It comes from being charged with adrenaline and poised to act for an extended period of time. Even when things calm down and Collin falls asleep after a cluster of spasms (he gets extremely sleepy after seizures), I'm still on edge because I want him to wake up and show me that he's okay. Plus, I think that our fantastic Just Us Weekend was part of the problem today, because we had SO much fun and spent SO much relaxing time together that Monday came as a bigger shock than normal, even without these kinds of stresses.