Ivan: Hello everyone! A lot has happened recently that we’d like you all to be aware of and that we’d appreciate lots of prayer for.
Two Thursdays ago (11/2), Grace met with a new neurologist who specializes in epilepsy. She diagnosed Grace with permanent focal epilepsy, which means that the seizures are coming from a specific part of the brain, as opposed to a “generalized seizure” which occurs throughout the entire brain. Unfortunately, since Grace’s seizures originate from the parts of her brain that were damaged by the strokes, they are permanent…you can’t reverse a stroke. This was a huge blow for us, because not only did we just recently learn that Grace’s “episodes” were actually seizures (we were hoping they were TBI-caused episodes that she’d eventually grow out of), but while we knew that seizures can range from mild to severe, we didn’t expect to receive a diagnosis of permanent focal epilepsy (which is pretty serious).
The following Sunday, Monday, and Tuesday, after adjusting some medication, Grace continued to experience seizures, but this time with new symptoms indicating a severe form of seizure. We reported these new developments to Grace’s neurologist, and on Wednesday her neurologist called us and gave more news: based on the symptoms we reported, Grace is at risk for status epilepticus. This is a condition in which a person enters a prolonged seizure or a series of back-to-back seizures from which they don’t come out. It can be fatal.
The doctor adjusted Grace’s medication again, and Grace began taking the new meds on Wednesday. The goal of epilepsy medication is to control the seizures (meaning, prevent any from happening), not necessarily eliminate the seizures–but on Thursday, Grace had another seizure. Which brings us to…
Friday, November 11. Yesterday morning, Grace was doing her morning exercises when an unexpected loud sound triggered a seizure. I was there with her, so I gave her a “rescue” med that’s supposed to quickly prevent more seizures from happening. A minute later, she had a second, then a third. I gave her more of her rescue drug. Twenty minutes later, she had a fourth seizure which lasted more than five minutes, which was my cue to call 911. Grace’s fourth seizure lasted a total of twenty minutes, during which time she was unresponsive, crying, breathing rapidly and showing a rapid heart-rate. The paramedics arrived and brought Grace to the ER. I caught up with them at the ER and learned that Grace had had a fifth seizure en route to the hospital–they’d given her even more of the rescue drug then.
Grace and I spent yesterday afternoon in the ER as the doctors monitored her to see if the medication finally worked to suppress any further seizures from happening. During our stay, Grace had a sixth seizure…cue more drugs. But praise the Lord, they stopped at six. Around 4:30pm they let us go, and we picked up even more new meds on our way home. Grace was very, very drugged–her thought process and speech were slowed, her balance was impaired, and she felt very nauseous.
We got home and tried to eat something but she couldn’t keep it in…after a few minutes we tried to eat again, and this time everything stayed down. All of last night Grace basically couldn’t support her own weight, her mind was very cloudy, and she could barely keep her eyes open more than ten seconds. The way a lot of these epilepsy drugs work is to slow down the electrical impulses in your brain, so that a seizure can’t occur (a seizure is like an “electrical storm” in your brain).
This morning Grace is still very drugged and is mostly bed-ridden. I don’t want to think about how much drugs they pumped into her body yesterday…not to mention the hundreds of thousands of pills/IV dosages she’s had since December 3 last year. She’s been incredibly brave and strong, still trusting God. But she was scared yesterday, and I was scared.
From a human perspective, this is all too close to death. For the believer, death means meeting Jesus face to face and being with Him forever, which is the best, in the most literal sense of that word. But while we are earth-bound, death reminds us that sin has broken the world, and our lives.
But God is still sovereign, still good, still gracious and merciful and in control, and powerful and faithful and worthy of all praise, glory, worship and honor. Our Lord Jesus has overcome all, and we will keep walking with Him.
Thank you all for walking with us! Grace and I “thank our God every time we remember you.” We love you all, and thank God for loving us first. To Him be all the glory now and forever!
11 thoughts on “Status Epilepticus.”
Oh no…..praying for you guys
Sent from Lisa’s iPhone
I was thinking about you two the other day, thank you for the update. Continued prayers from my friends and family who know your situation ❤ my heart aches for both of you.
^I forgot to put my name haha but that was from Sara Holman (Gollehon)
Ivan, I am praying constantly for Grace and you and for Keith and Terri. May the Lord hold you in His arms and may you feel his strength and presence every moment.
Dear Grace and Ivan, there just aren’t words, except words to our Father on behalf of you dear ones. In your “obligatory hospital selfie,” we can only see the peace in your eyes and the love you have for each other. May all the rest of it be brought under control by the Creator, who made and knows and loves both of you so much.
Thank you for your update. We having been praying and will continue. Our God is the great physician and we call on Him. We pray for your strength and peace. We continue to pray for miracles and thank Him for the amazing answers to prayer in your lives the last many months. Many at Hillside love you both without meeting you. Pam Wass
Praying anew for endurance in the face of such testing.
Thank you for the updates I follow them like I experience myself. I felt heavy laden. We unceasingly prayers for you. God gave you special strength to face all these heavy life.
We prayed for you at our Prayer Meeting this evening. May healing and the Peace of Jesus continue to be with you,
You probably don’t know who I am. I come to UCO rehearsal while my husband Walt had trustee meetings. I always enjoyed watching Ivan accompany the choir and orchestra. When I learned of your accident I was heart broken for you, having recently married and then to have than horrific accident take place, a young college student with so much ability. I have followed your blog and am amazed at your strength and faith as you have gone through so much. My prayers have been with you. Whatever you face, I see your faith and strength in the Lord. May you continue to fight through each battle but know that many are praying for you.
If there’s np grace, status epilepticus would be my reason of nonexistence.