New plan for Shaun this morning. We are going to start to ween him off the pentobarbitol as it has long term side effects on the body (especially the heart and edema) and he has been in a "restful" state for a while now. The new meds he is on helped lessen the seizure activity last night, not fully taking it away, but helping. It is time to see what his body tells us, mainly his brain, and we will go from there. This is a multiday process so keep praying for our little fighter!
During the day they were able to back off the pentobarbitol some (not completely) and see some increased activity. Shaun - and Denise (and our cousin Mike, staying with Denise at the hospital) - enjoyed having many visitors come.. Shaun's Great Grandad Cole, Great Grammy Pat, Great Aunt Karen, Grandad (Denise's dad), Grandmomma, and Aunt Christiana were among those who visited.
Denise, the ever watchful mother, noticed that Shaun would have some more active periods that lined up increased and more prolonged (than the seizures) activity on the EEG. She inquired about this and so tonight the neurologist came to review Shaun's EEG readings for the entire day.
Denise updated us again tonight on facebook with the new plan based on what the neurologist found:
One step forward and two steps back... Shaun seemed to be doing well until I noticed longer awake periods with scrambles in the wave patterns. I asked the docs what it meant (good or bad) and the news was that they would eventually build into seizures again. So new plan again : keep him at this dose of pentobarbital for now, other meds stay the same and load him with Topamax for the next 2-3 days. Shaun always beats to his own drum and we just need to listen and get on the same rhythm. Pray for us to have a breakthrough soon. Thanks.
As Shaun fights on, we join him in this fight as we pray for this precious life. Our hope is in the Lord, who is our refuge and strength, an ever-present help in trouble (Psalm 46). While we cry out to God and implore him on Shaun's behalf, we trust that His will will be done on earth as it is in Heaven.
Thank-you for taking the time to pray and send encouragement to Denise, Peter, and the Steyaert family.
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