I have felt nervous all day, with a lump in my throat and a knot in my stomach. I have found that I am now living what I have been praying would never be our reality, life with seizures. I knew the odds, the statistics, but I still hoped they would never show their nastiness on our boy.
Oh have they ever...
Early this morning around 5 am, Truitt woke up crying. He does that here and there and like always Greg went in to check on him and brought him into our bed. I cradled him in my arms and began dozing off to sleep when I felt him jerk. And jerk, and jerk. A darn seizure, as he lay in my arms. I counted as I have been taught to do and it just lasted about 20 seconds or so. Fairly typical for his seizures so I squeezed him a bit tighter and continued to fall asleep.
Sure enough, about 5 minutes later he began seizing again. This time it lasted almost 2 minutes. That is long for him, but this time I noticed something different. I feel chills come over my body just thinking about it. This time, he wasn't breathing well. I didn't feel his chest rise for the whole 2 minute duration. I felt for air releasing through his nose and mouth, and I felt that. A slight reassurance that he was still breathing. But I was terrified. Just the thought of him not being able to breathe well rocked me to the core. I immediately felt panicked, and finally he came out of it. Just in time to save me from a breakdown. As he did, he was gasping for air, similar to a child who has been crying hysterically. A few minutes later another short seizure followed, then he fell right to sleep and was fine in my arms.
I called Neurology first thing in the morning. I needed answers, why did he act that way? It couldn't be normal. He is now up to 75mg of Topamax in the am and 100mg in the pm on top of the Phenobarb and Keppra. So why is he getting worse?
We just started the increased dose last night following his Neurology appointment yesterday afternoon. He has still been having seizures every other day or two. But never so many in such a short period of time.
So, back to the phone call into the Neuro Clinic. They called me back and said that is totally normal with a seizure. WHAT?!?!? Normal?? I was shocked, but she reassured me that although the lungs don't appear to be functioning well, they "typically" are functioning just fine during a seizure and that Truitt was indeed getting plenty of oxygen without taking deep breaths. All due to the fact that seizures temporarily paralyze muscles in the body.
I'm learning something new every day, like how to NEVER want to take my eyes off that sweet boy. Just when I think things are hard, they get even harder. For now, I will continue to count my blessings, and pray each and every day that these seizures will soon be controlled. I need much less anxiety in my life. Like, now.
So please Topamax, work your magic already!
“One day at a time, this is enough. Do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful it will be worth remembering.”
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