Another seizure

At the beginning of October Jacob had another seizure.

It was actually on Saturday evening, after the priesthood session of general conference.

Jake had gone to the meeting with his brother Matt, and the were at home watching TV on the couch when my sister in law Jessica and I returned from an evening out shopping with the kids. We were all in the family room together on the couches, when Matt alerted me to Jake having a seizure.

I was on the opposite couch and looked over to see him in a grand mal seizure. It came on so quietly and imperceptibly, that no one even noticed for several seconds. All of the kids were in the room, and were immediately scared. A few of them started crying, and thankfully Matt and Jess had the presence of mind to take them out of the room.

I had left my place on the other couch and went immediately to Jacob's side. As with his seizures in March, an overwhelming calmness came over me and I was able to calmly speak to him, telling him to breathe and that it would be over soon.

The seizure was over quickly, and he returned to alertness within minutes. His right arm was still immobile, and his speech was slurred, but within a few more minutes his arm was moving and he was able to answer questions with one or two word answers.

When he was restored, I ran back to check his pill box and saw that he had missed his morning dose of Keppra, his anti-seizure medication for the last two days, and then another morning in the same week. I got the pills and had him take them once he could sit and swallow, and for the next two hours he did not seize again.

In fact, he was soon able to sit up and we brought the kids back in to see that he was ok and he was able to tell them each goodnight. He still felt very weak and was tired but his words and movement came back so much sooner than with his seizures in March.

I had called the hospital and spoke with the on call neurologist, who told me to keep him home unless he seized again since he had missed some doses of his medicine.

Gratefully, for the next hour Matt was able to sit with Jake while I went back and talked to our kids and got them into bed. I won't go into all the details, but thanks to my counselor and the guidance of the Spirit I was prompted in the things I asked them about and just listened to each girl's experience, what they remembered, what they felt, and what they feared. We prayed together and it was a blessing to be able to reassure them before they went to sleep. We are continuing to talk about the seizure event and help each of them, and even Tommy, to process the event so that they are not so traumatized by the experience.

Our home teacher came over and he and Matt gave Jacob a priesthood blessing. I am so grateful for priesthood blessings and know that they are a vehicle to convey help and an increase of the Spirit when we need it most.

After the blessing, Matt walked Jake back to our room while I was seeing our friend out at the door. Matt said that Jake went to the restroom, and then came back and was sitting on the edge of the bed. He looked unwell, and Matt asked him if he was going to seize again. Jake said yes, so Matt told him to lay on his side on the bed and almost immediately he had a second seizure. Matt called to me and I came in and found Jake seizing on our bed. I went right to his side and just touched his arm as I looked in his eyes and spoke to him again, reminding him to breathe, that it would pass, and that I was there.

After this seizure I knew what to do, and when it subsided was on the phone with 911. They had the ambulance here in 10 minutes and the head paramedic and I recognized each other from before. Jake was again recovered so much more quickly and was able to answer some of their questions as they got in an IV and loaded him up on the bed. I followed the ambulance in our car, so that we'd have a vehicle in case he didn't need to stay the night, and we went back to St. Joes. I think they wanted to take us to a closer hospital, but since none of them had seen Scalpie before and were a little intimidated by what the head device was and did they took him to where his records and doctors were located.

Matt came down soon after and the three of us sat in the emergency triage area for several hours, until we sent Matt home to get some rest. He was in the middle of his finals and had some serious test taking ahead of him. The nurse gave Jake an IV of Keppra, and soon after he said that he felt much better. They ran an MRI several hours later, and waiting for that was the worst trauma, but the neurologist came in and said it looked unchanged from his scan in September and that we were free to go.

So we got home at 4:00 am and thankfully Matt and Jess were able to spend the night, get up with the kids and let us sleep until 11:00 am. We spent the next few days sleeping and napping to recover, as Jake especially needed to rest.

It turns out that the Keppra does lose it's potency in your body if you miss any doses of it, but it doesn't manifest until a month or two later. Jake had always been faithful to take his pills, but in August missed a morning dose. We were both worried, but nothing happened. Then a week later he missed a morning dose again, but nothing happened. This went on for several weeks, and truly unintentionally he'd miss a morning dose or two a week, but nothing happened so we both started to think the medicine wasn't really that necessary.

Well, we learned better.

This experience was probably the least traumatizing for me, because it had happened before, but it is still a very scary experience to see someone, especially someone you love, having a seizure.  But for everyone else in the room- Matt and Jess, our kids, and especially Jake it was very frightening. Unlike his seizures in March that he has no memory of, Jake was conscious during most of these seizures and remembers feeling trapped in his body. He wanted to yell out but could not, nor did he have any control of his movements. I can't imagine how terrifying that would be.

We went to counseling the next week and as time has passed he has been working through the experience and finding more and more peace. He has taken his pills faithfully and has tied them to the plugging in and out of his medical device so they are part of his morning and evening routine. He is not able to drive for a while, nor does he want to, and we are grateful for friends who are able to help us with the multi-kid shuttling.

It was not a fun experience for any of us, but we really feel that if it had to happen, it could not have been in a better way. It was so fortunate that we had Matt and Jess here to immediately step in and help, that Jake was sitting down (not standing, driving, alone with kids, etc.), that he was able to recover so quickly afterwards, and that there was nothing troublesome on the MRI. We will still go in for his regular bi-monthly scans in a few weeks, but thankfully he has been able to continue functioning as usual. We don't take that blessing for granted.

However, as I've said before, a very  difficult part of this disease is that it is so incompatible with being young. Many older people will tell Jacob that they can relate to his issues of a foggy memory, being "retired" from work, and not feeling as perky as they once did. Yes, they can relate to how he is feeling, but the difference is that Jacob is only 36, with four young children to take care of and the desire to be out  doing the things that people his age are doing.  If we were of the empty-nester generation his disease would still be every bit as difficult, but it wouldn't be so incongruent with the lives of our peers who are other young parents. We would have a peer group of soon to be retired people, more widows and widowers, with the prospect of declining health and abilities.

And yet, somehow it is the lives and needs of those four little people that have kept us going, that make us smile, that give Jacob the strength to push on. Being able to take care of our kids gives us each a reason to get out of bed in the morning and things to do all day, every day. Preparing their lunches, reading with them, practicing the piano with three of the four, attending sports practices and games, inviting their friends over to play, and running them around to all kinds of appointments and activities fills our days and keeps us distracted from the heavy that is this disease. So you see, facing this disease as a young family has its ups and downs. I really believe that we ALWAYS have a choice, and even in this circumstance I choose to, and have had, a wonderful life and I think Jacob and our kids would say the same thing.