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.
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).
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.
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).
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 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.
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.