About Me

On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.

Tuesday, March 4, 2014

Eventful day

Surgery is scheduled for tomorrow at 7:30 AM. So today we had to finish the brain mapping. Because they are sending electrical input to his brain there is such a risk of seizure activity. Jayen had to have labs drawn in the morning and an IV placed for the fosphenytoin they were giving him before the mapping. Jayen hates IV's. It took 4 grown adults to hold him down just to place the IV. Around noon he was given the fosphenytoin so it had time to kick in. Jayen's body did not like this medication. During the drip he started gagging, he was pale, clamy, and drowsy. He took a little nap while waiting for the doctors. Dr. Arquillo, Dr. Frost, Ed and Linda from EEG, Paris our nurse and couple spectators were in the room. Jayen did amazing. He was, in Dr. Frost's words, happy drunk. They did not stimulate any motor functions so they will be able to remove the areas with no risk. They are looking at removing the area in the right frontal lobe that had the PMG. This is the area all the seizures seem to originate from. There is also an area in the orbital frontal that seems to have some seizures originate or occur 1/10 of a second after the frontal lobe PMG. There are two areas in the temporal lobe that they aren't sure if are areas of origination or just highways from the origination. After the frontal and orbital resection they will hook up EEG to see if the temporal areas are active. If they are still active they will remove those areas as well.
I can't believe we have gotten to this point. This has been such an amazing, long journey. We are close enough to see the finish line. Can my baby really be seizure free? Is this really going to be the start of a new journey for Jayen? I'm so nervous but so excited. Tomorrow is going to be one crazy day!

1 comment:

  1. John and I are praying in earnest as you begin this eventful day. God bless you!

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