We're about 24 hours into a multi-day EEG. Our girl has been a champ so far. She took the oral "loopy" medication with a struggle, but she swallowed all of it. Then, she handled the anesthesia well when they put her under to place the leads on her head. She was more aggravated by her hand being wrapped for the IV than she has been with the leads wrapped on her head.
The gauze kept coming loose yesterday afternoon, but we finally realized that the glued leads did fine unwrapped, so we just put her bandana on when she's sitting up so her hair doesn't fall in her face.
I went to the Dollar Tree Wednesday and bought $25 worth of new toys, flashcards, and books, hoping that we could entice her to keep her hands off her head for three days. We've only pulled out a fraction of the two large bags of entertainment so far, and she's been very compliant about not messing with the long tail that leads from her scalp to the wall.
This place is wonderful. The room we are in has a camera in the ceiling. Olivia's EEG monitor is connected into the wall, and someone "upstairs" is monitoring and recording her the entire time we're here. There's a playroom we can go to once/twice a day that also has a hookup for the EEG and a camera to record. We have a button to push anytime we see an "episode." But, since we are so used to seeing Olivia stare off into the distance or disappear into her world, we have yet to push the button... The staff has been great and you can tell that they strive for excellence in their service to patients and their families.
So, here we are. Twenty-four hours in for what is/was supposed to be a 72-hour EEG.
The doctor came in this morning and I felt my stomach fall to my toes as I waited to hear what he had seen (or not seen) on the EEG. I'm so bad at remembering what doctor's say... one of these days, I'll be smart enough to record the conversations... Luckily, Brian was in the room, too. So, he can help my poor memory.
One of the first comments the doctor said was, "Her EEG is abnormal." He went on to explain that an abnormal EEG does not mean there are seizures. He didn't see any subclinical seizures (seizures with no visual signs like convulsions). The abnormal part of the EEG is coming from the left side of her brain. He said that around 3% of "normal" people have abnormal EEGs. A greater percentage of people with developmental delays have abnormal EEGs, but that isn't surprising, as it is evident by the characteristics of developmentally-delayed and autistic people that the brain is not working "normally."
Abnormal EEG.
This is the first medical test that has come back without the "normal" stamp on it. Yet, we have no more answers, really. She doesn't have seizure activity, but there is a possibility that she could develop seizures one day. Lots of unknowns. The mystery continues...
He wants us to be diligent today to push the button if we see anything we would label as an episode. So, we're watching. Trying to focus on behaviors that are normal for our girl, but not for most brains. If we can label a few "episodes" today that he can then match specifically to the EEG, he feels he can definitively let us know if her left-side abnormalities are happening at the same time and, if there is a connection, what that means. If this happens, we may be going home this afternoon.
If we see nothing today, then he said we'll stay another night and see if we notice any episodes tomorrow.
I've prayed for answers, for a path. But, I've been so blessed by the mystery, that I'm often torn by what I desire. Answers... mystery... normal... abnormal...
I admit I've prayed that she has seizures. For it would be a path, and one with possible solutions that might improve her language- and who knows what else.
However, I watch Rhema and Mia's families struggle and see those two precious girls suffer with brains that reboot all the time, and I feel guilty for thinking that epilepsy would be a welcome diagnosis.
I wonder if we're doing all we should be doing for our girl, if we're searching down the right paths for answers, visiting the right doctors, asking the right questions, getting the right therapy. Praying the right prayers...
God, thank You for blessing us with an easy hospital stay so far. Thank You for my mother, and Jacob, who are at home focusing on getting to/from school and getting homework done. Thank You for our sweet Jacob, who is having his class pray for Olivia every day. Thank You for family and friends, who are praying for us, for our girl, that answers come. We feel their love surrounding us, and it is Your love radiating from them. Thank You for the time we get to spend together is this room, and that there is technology available here to get a clear picture of Olivia's brain activity. Thank You for providing peace in the mystery, and for Your grace when we struggle to trust You.
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. - Philippians 4:6
3 comments:
Donna, i am familiar with those feelings about answers vs mystery. I hope that you get the answers that can help you all. I know thouh that you are doing everything in your power to help Olivia. Know that our prayers are with you.
Wow! You know...I think of you guys often & wonder how you're doing. My heart is heavy for you. Please know that you & Brian are two of the most special people that I have the honor of knowing in my life. To do what you are doing & what you have done. You definitely have God's strength & will in you. I pray for you, Brian, Jacob, Olivia & your family. That you all have peace of mind & body. That you are blessed with comfort, healing, understanding and answers that you seek with Olivia's "mystery". I love you Murray's. I hold you all in my heart. Lots of love!
Michelle Blackburn
oh, sweet girl. looks like she handled the EEG very well and that is such an answer to prayer! i remember well the 3-day long-term EEG monitoring stints. oy.
i'm curious to know how the remaining 2 days went?
rest well, mama. good job.
praying with you.
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