Cleveland Clinic: Day 6

08/18/2012

Philippe had an early morning blood draw for some of the tests Dr. Prihk wants done.

 

Every day, including weekends, the doctor comes to our room to discuss what's going on. Today on her morning rounds she told me she had watched the video and reviewed his brain waves on his EEG from the night before and she said Philippe had a seizure, and that he did indeed have epilepsy. (in my head I was rolling my eyes and shouting "YA THINK?!"). For now, the best course of action is to try a different medication and see how it goes... 

Every day at lease once, if not more, the techs come in to adjusted Philippe's electrodes. He HATES IT!!! And I have the bite marks to prove it!  They fill some electrodes with the special conducting lotion, others they put more stinky glue on with the air hose to hold them down better, and sometimes they have to use Acetone to take it off and re-do it completely. 

Thank goodness Crystle has been here since Tuesday to help me!

Today I met an angel. His name is Brendan. He's 8 years old. His family is from Idaho and they're LDS too. He's in the room across the hall from Philippe. He has the sweetest little spirt! He told me all about how he got Baptized and he sang one of his favorite songs, "A Child's prayer". Of all the times in my life I've heard that song, never was it as beautiful as when Brendan sang it, mistakes and all. I fought back tears as I helped him with the last few words. God puts special children on this earth to remind the rest of us how much He loves us, and to give us some of the most beautiful, memorable moments we'll ever have. I'll never forget meeting Brendan, or his wonderful mother, Joy. 

Joy & Brendan, with my daughter Belle.

2 or 3 times a day Philippe gets to get out of his bed and walk around for 10 minutes carrying "his box" (the small square all the wires for the EEG are plugged into). He has to stay in the Pediatric Epilepsy unit, which is only 1 small hallway with a few patient rooms and the nursing station. 1 of the rooms is a toy room he plays in for a few minutes, then he walks up and down the hall entertaining the nurses a bit, then back to his bed he goes to be hooked up to the EKG and EEG machines again.

Also, today a nurse told me that John, a 15-year old boy across the hall, had a special request that on one of our "walks" Philippe stops by to meet him and say hello. It was fun to chat with him and his mom Monica instead of being cooped up in our room!

John & Philippe

-Candice