In December of 2009, Stephanie had her first seizure, with no history of seizures or any understanding of what was causing it. They informed us that she would not be allowed to drive for six months, if she went that long without having a seizure. Then, in March 2010, she had her second seizure. It was at this point that she was diagnosed as epileptic (which is defined as having more than one seizure in the course of six months). After a seizure each in April and June, and a couple different doses and medications, we thought we had found the magic cocktail to control her seizures. It had been nearly four months since her last seizure when she had another at 1am on Wednesday, September 29. This was a huge blow to our hopes and she went from being allowed to drive in December, to now having to wait until April 2011. But, we’ve been through this letdown before, and we were hopeful and ready to endure another six months of waiting.
After a seizure on Wednesday, September 29, following nearly four months of no seizures, Stephanie was taking it easy and I was taking time off of work as much as possible while my parents watched Brady (3) and Halle (1) so that she could get as much rest as possible, as lack of sleep is a trigger for seizures. The week was mostly uneventful, though she was still wiped out physically from having had a seizure earlier in the week. On Saturday, October 2, Stephanie was having petit mal (or, absence) seizures, which a short seizures that appear as though the person is spacing out for a moment. They were more powerful than usual and Stephanie had the feeling she might have another grand mal (tonic-clonic) seizure. By midnight, I talked to a doctor and filled a prescription for Ativan in addition to her current medication, and she took a dose at 1am on Sunday, October 3.
At 1:25am, Stephanie had another grand mal seizure. This would make two seizures over the course of 4 days. Previously, the closest she had had two seizures was a month apart. Worse yet, she had another grand mal seizure at 2:20am that same day, making it less than an hour between seizures. I made the decision not to call EMS because there is really nothing they can do to stop a seizure, and she was safe from injuring herself. They’ve also run all the tests. So, she stayed home.
A good day
Stephanie had two seizures in the early morning on Sunday, October 3, so we were taking it very easy during the day. She was getting much rest and relaxation. She was feeling much better with no petit mal seizures and no indication that she would have another seizure. (It’s called an aura when someone can feel a seizure coming on. She did not have this aura all day on Sunday.) My mom had taken the kids and Stephanie and I had a great day enjoying time with each other. We spent some great time having devotions with God and talking about the kids and about us. The plan was for us to reach our 50th anniversary, at least. We also spent a good amount of time praying and talking to God about everything, and lifting up Brady and Halle to Him, as well as Stephanie’s seizures and praying for family, etc. It was such a wonderful time together, and we were so glad to be done with the seizures earlier that day. I was anxious for Monday when I would be able to call her doctor and talk to him about what had happened.
After a great day together, 10:08pm on Sunday, October 3, brought the third seizure in 24 hours and the fourth in five days, which was unheard of before this week. It seemed like a normal seizure for Stephanie until she reached the post-clonic state (this is an unconscious-like state which follows the seizing that most people associate with a seizure).
During the post-clonic state, she was breathing strangely, taking deep breaths every 8-10 seconds. It wasn’t long before I realized that was the only breathing she was doing. Shortly after that, she stopped entirely. It had been a long time, but I did the best I could remember to give her mouth-to-mouth, calling 911 soon after that. I was instructed to keep up the mouth-to-mouth (and given a refresher in how) until EMS arrived.
While EMS was at my house, she had a cardiac arrest, which would end up being the cause of all our worries. They were able to restore her heartbeat and were helping her breath as they transported her to Marymount Hospital, where she was taken the previous times I had to call 911 (in December and March).
Marymount Hostpital has been wonderful to us, and we love Stephanie’s neurologist who works from there. After getting her settled and working on her for some time, they realized they did not have the capacities for what was going on and needed to transfer her to the Cleveland Clinic (Foundation). Before she was transferred, she was having more seizures. They were more like shivers because of the medications she was on helping to settle them down. She was flown to CCF and set up in the neurological ICU, while we waited for 2+ hours to see her again.
The doctor came and talked to us about the lines they needed to run to administer medications, and also about getting her stable. Her main point was that we get the seizures to stop. To do this, they were going to sedate her until her brain activity calmed down and the seizures stopped. After they stopped, they could start to bring down her dose of sedative and see how she responds, whether she had seizures still or not.
We spent the early morning hours mostly just waiting to get some sort of hint as to what was going on with Stephanie. They knew very little, but informed us that their goal was to get her set up on an EEG to monitor her brain activity. That required some time. We got very little information because the doctor had not done her rounds yet to look at each patient, so it was all based on what the nurses were observing. Speaking of, the nurses have been incredible. They’ve been great sharing any information they have, and showing kindness and caring, and approaching the doctor with any questions they can’t directly answer (although they always try).
Around 11am, we finally got to talk to a doctor. The EEG had been set up and was monitoring Stephanie, but it would be a while before we had real data from which to gather results. The doctor gave us some very hard news, informing us of the affects of her cardiac arrest that happened at our house. Because her heart stopped beating (and we don’t know how long that lasted), her brain wasn’t getting the oxygen it needs and is likely (i.e. most assuredly) swollen, which can lead to very bad things and brain damage. It is possible she has a blood clot in her brain, or fluid, among other things. The short of it is, we won’t know until we can take an MRI of her brain. The doctor informed us that she wasn’t stable enough to be able to order an MRI. We needed to wait for her blood pressure to normalize (hers is typically lower than normal, plus she was getting medication to bring up her blood pressure to counteract the fact that the sedative was bringing it down) and for them to be able to reduce her sedative. They really do not like to take a patient to get an MRI while being on the blood pressure medicine.
That was not the worst news. We were informed that she was showing signs of not responding with higher brain functions. For instance, her arms were in such a way that indicated her brain stem (primitive functions) was in control, and she had no corneal reflex. She listed some other things and reported that these were very discouraging signs. The encouraging signs were that her pupils were reacting and she was showing some responses that were higher brain functions. Sadly, her conclusion was that things were not looking good, especially if she didn’t stop having seizures (still going on at that point) and start responding more to things. The doctor is very concerned over the swelling in Stephanie’s brain. And so we wait on the MRI.
I was crushed at this point. I couldn’t bear the words I was hearing, even though I held my composure while the doctor talked. I lost it after she left and we all in the room cried and sobbed for some time. Prayer was constant, one of the pastors who married Stephanie and I came and comforted us, and my and Stephanie’s parents and her aunt were all here.
I cannot bear the thought of losing my wife. (Who could?!) Whether that be physically, emotionally, mentally, or any other way, I just couldn’t stand it. I felt like I would never stop crying, as the doctor’s words rang in my ear, crushing every hopeful thought I had. No doubt, I pleaded with God, and demanded that He not take her from me and her babies. While I would be crushed to lose her, I’m more concerned for my kids. They are such sweet, gentle little souls, and so much of that is because of Stephanie and the wonderful mother she is. God can NOT take her from them. I told Him I won’t let Him.
As the devastation wore off, Stephanie started to improve. I left in the mid-afternoon to see Brady and Halle and spend some fun play time with them, because I know how badly they must be missing their parents. That was good for me, as I tried to push the sadness out of my mind. I found out from my in-laws that she was doing better, and that they were able to reduce her sedatives by a third, and she was still doing well. That meant that the blood pressure medicine would soon be lifted, if possible.
By the time I got back to the hospital, the nurse had completely taken Stephanie off of the blood pressure medication, and she was maintaining a good blood pressure (higher than usual for her, but in a very healthy range). The MRI that had been ordered earlier in the day would go on as scheduled to happen sometime in the middle of the night, and she wouldn’t have to have any medication during it. She was doing better and looked to be resting more normally. Now, it was just a matter of getting to the MRI and finding out the results.
I have really been resting in God’s goodness throughout the evening. He is so gracious and lovely and beautiful. He is the Great Physician and I know He can make things happen that no doctor could ever imagine being possible – because it isn’t in the natural world. I am resting in the fact that He can completely heal Stephanie and guide the doctors in what they need to know. And if, for some reason, He doesn’t, I know that’s what is best according to His plan. I know I’ll likely never understand it, if He takes us down that road, but I know I will grow immensely closer to Him because of it, and I would be so blessed to gain a closer relationship with God.
It’s 10:15pm as I write this, on Monday, October 4, the day after Stephanie had a cardiac arrest after she stopped breathing due to a seizure. Her seizure started at 10:08pm, practically 24 hours to the minute. I remember we were talking and watching TV and having a wonderful night together. I can still remember my horror when I turned to look at her and realized she was having yet another one. Three in one day! How is that possible? Horror turned into terror beyond words when her breathing seemed erratic and not sufficient to the point that she stopped breathing.
I never thought I would ever actually have to give mouth-to-mouth to anyone, let alone a family member. It is disturbingly similar to how it is on the practice CPR dummies. Her chest was rising and falling in accordance to the air I was breathing into her. It felt just as forced as it was. She wasn’t breathing at all. I was faking it for her, and I’ll never forget what that felt like. From calling 911 to answering the questions for EMS to gathering my things to take with me, I felt like I knew exactly what to do while also having no idea at the same time. I had been here before, worrying for my wife’s life. This was different, though. She stopped breathing. They used a defibrillator! I didn’t like “new.” Heck, I didn’t like “old,” either, and this was infinitely worse. Whose life was this?
I thank God that my children were at my parents’ house that night. Brady has seen at least three of Stephanie’s seizures, and two of those involved EMS. I worry for that little boy and how that affects his security. But this time they weren’t at home. Thank God that I was home. I’m so glad to have been at Stephanie’s side for every one of her seizures, and yet at the same time, I hate it.
I’m writing all of this while I continue to wait on the MRI. It will happen sometime tonight, but we won’t know until it’s time. And even then, it is a 1-2 hour test, and we won’t get preliminary results right away. Final results will have to wait until the morning when a doctor can really look at them and study them. I can’t anticipate that time enough, and yet I’m again terrified at what I will hear.
Thank you all for your prayers and for your love and care and concern. I cannot tell you how much it means to me, and I have found myself crying my eyes out at the love that is being heaped on me by everyone. Thank you. May God bless you all, and may He work His best in each of your lives.
It’s amazing how much you think about life and memories when uncertainty hangs in the balance. Stephanie has always said to me in regards to things she does that annoy me: “Someday when I’m gone, you’re going to miss that about me.” Well, she doesn’t have to be gone for that to happen.
Before I get to things that annoyed me, I find myself eating this salad. (Looks good, don’t it?) Those who know her know that salad ranks somewhere just above black tar in terms of things she wants to eat. Me? I love a good salad. She always laughed at how I would eat a salad as a nighttime snack. I wish she could laugh at me now. As a side note, I have Caesar dressing, which would basically kill her because she’s horribly allergic to fish.
They’re also blasting some swanky big band jazz here in the cafe. I recently heard “In the Mood”. That was our first dance together. Boy, does that take me back. My advice to anyone is NOT to have that as your first dance. If you don’t know, it’s a terribly long and repetitive song. We had to laugh because we eventually just walked off the dance floor mid-song. Oops.
Things that (slightly) annoyed me that I miss right now include her mockery of me when trying to say certain words. Apparently, I say “rune” when I mean “ruin.” It seems I sound like I’m from a – shall we say – less cultured part of the country when I say it the way I do. For those keeping track, I have since amended my ways. Really, so little annoyed me, but then again, how could anything annoy me right now. I just miss all of her.