Seren started on Phenobarb last Thursday night. We were excited because it initially seemed like Seren's seizures were getting less frequent and less severe. However, over the weekend Seren's condition changed and she started having seizures again. She also became very irritable and fussy. Up until this point she seemed very content and comfortable and rarely ever cried. We were all sure something was wrong but none of us could pinpoint a cause. The nurses called and confirmed the the meds weren't the cause of her agitation but she just wasn't improving. The head nurse (in her infinite wisdom) was concerned that we might be missing another cause of Seren's change in behavior and recommended we take Seren to the doctor. And so, yesterday morning, we found ourselves at the pediatrician's office, where we were informed that Seren has an ear infection-just like the rest of us!
Seren's ear infection was actually good news. It could be that the seizures and fussiness are just due to the ear infection and not an indication that the Phenobarb won't work. We know she didn't have an infection last Thursday because they looked in her ears at Duke so its likely that she developed the ear infection and got fussier and fussier as the pain got worse.
I had been feeling pretty low because I still want to believe that everyone is wrong about Seren and that her brain is really in much better shape than predicted. This little hope/delusion/whatever you want to call it, always gets smacked down whenever I have to read a doctor's report. I got the report from Duke this week. I hated it. On top of that, I couldn't sleep at night because all I could worry about was that Seren was trapped in pain, crying, fussing, having seizure after seizure. However, now we know Seren isn't totally trapped. She can tell us when she's uncomfortable. Not only did she get fussy with her ear infection but we know she doesn't like getting her toe pricked to draw blood and we know that she can be comforted afterward. So it seems that despite all the bad news we did get some good news. Poor baby has an ear infection (and those darn things HURT) and I hate that for her. But, at the same time I'm so glad she let us know and that its something so easily fixed! The antibiotics should start working by this weekend so hopefully we'll get some idea of whether the seizures are slowing down also. Here's hoping!
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Hey Jennifer, I remember you having bouts of ear infections as a baby (and you could be quite fussy too...poor baby!). I think it's so special that this "event" is something that has shown you (and all of us) that Seren can express her pain and also receive and benefit from your comforting and love! Although, it so difficult to think of her in pain, we now know she can let us know perhaps more than you know before...to me that's such a blessing from God. He graciously granted you a way to know just one bit more about your precious daughter. We'll keep praying for daily grace and joy as you minister to your daughter and to all of those you encounter around her. Give my hugs and love to Grayson too!
ReplyDeleteI'm sorry that she had to get an ear infection at all but happy that through it you learned that she can communicate with you. I know that Seren will keep surprising you. She is a miracle and proves it every day. Sending love and prayers!!!
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