Thank you for your prayers. It was so good to hear of your prayers and concern. We are home.
After a day of observing him on his meds with the EEG equipment on, Wednesday afternoon the epileptologist told me that they wanted to sleep deprive him. So Danny and I had a party with the Wii (which we have to get for Christmas…somehow!!!) until midnight and then the nurse woke us up at 4:30am. Then it was decided on Thursday that we would take him off the meds. The epileptologist was convinced this wasn’t seizures and I was so excited. So relieved. I walked through the hallways of Rush pediatrics thinking we were never coming back!
Then Thursday afternoon, after he had a long nap, no evident seizure events…I became more and more convinced that he didn’t have seizures. So Joshua showed up and we started to think about leaving. Then I talked with Dr. Buhrfiend and we waited until Friday. And we were told we were leaving. So Friday morning, (after a pretty good night’s sleep on a board/couch thing) I received a phone call from the epileptologist. He had changed his mind. Danny, after a day off of his meds, showed abnormal seizure tendencies and he was comfortable with the original diagnosis of seizures. He wanted to see an "event" so it was decided to have him go home with all of the EEG ambulatory equipment.
Ambulatory means he has a little backpack with the wires and everything. His head is covered with the metal electrodes and wrapped like a turban. He was adamant that we were going to AWANA so after a little birthday party for our Ella who is four…off we all went. He did pretty well until about the middle of the evening. Then he spent the rest of the night with his little head in my lap.
Now we need to ask your prayers for wisdom and courage for our boy. He is struggling with head pain (I think it is probably the electrodes) and he might have injured his ankle…he won’t put any pressure on it now. And, you just have to understand that I don’t want to take him to another doctor. What do we do? Also that we can see an event…if we don’t he will have everything put back on his head next Monday. This Monday it all comes off, it will be read in a few days but we cross over with Thanksgiving.
Joshua and I are struggling with exhaustion. We are discouraged by all that is happening around us and just are struggling.
Jesus, bring the rain.
Love,
Cara
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