Tuesday, June 15, 2010
How quickly things can change in life when we go about making plans. We were excited to venture out on our first maiden bus voyage...to the Spam Museum! And then things began to fall apart around here. Maisy's heart started to do some unusual things--very irregular heartbeat and her heart rate was dropping well below what her pacemaker setting was at. We have a heart monitoring system that records and sends data to the heart docs through the phone lines and so we were able to send some data to them right away. Dr. Singh thinks that things look stable and nothing to worry about. But this episode certainly reminds us of how quickly things can change in life.
And then Isaac began having seizures. They didn't look like anything I had seen before. They begin by laughter. He starts laughing loudly. We had seen this several times in the last days but didn't think anything of it except that we were so excited to see him doing something new. The next phase is "bicycling." He starts to moving his arms and legs in a rhythmic pattern. The third and most concerning phase is the final phase. His heart rate increases rapidly and he appears to get out of sync with his breathing..it is like he can't coordinate his breathing pattern. The whole process takes a few minutes and I am not clear if this whole episode is a seizure or if just a portion of it is. These types of seizures usually come from the frontal lobe of the brain.
Although we have other kids with seizures, we don't have a lot of experience with them.
My heart goes out to any family dealing with seizures in their child. It can be so scary. I am so thankful that the seizures that Isaac is experiencing right now are not scary looking (unless you know what they are.) For McKenna and Kaden, who both deal with anxiety disorders, it is such a blessing that Isaac can be having a seizure and he looks like he just very happy. God has not lost sight of any of the little details. We are waiting for some test results and then I am pretty sure that the neurologist will increase his phenobarbital dose. Most likely these can be controlled with medications. Each time he smiles, we wonder if it is going to turn into a seizure. How things can change so quickly...
So, I guess we aren't going to the spam museum today--but I will be sure to share with you all about the trip once we make it there..betcha can't wait...
at 11:40 AM