Nathan's Seizures

Isn't it fitting that I sit down thinking that I am going to update my blog because it makes me happy. And then the next post in line is the very thing I am trying to escape. So here it goes...

On Monday,October 10th Nathan had another seizure. All the kids were home from school that day because it was a teacher workday. They were laughing and playing around, enjoying having a 5 day weekend. I was happy, a little sad because Ken had to leave that evening for a business trip. Nothing really extraordinary was going on. Nathan had complained off and on about a tummy ache all day but then he would also go outside and jump on the trampoline or run around the house playing with his brother and sisters.

After Ken kissed us goodbye and left for the airport I told the kids it was time to have some quiet time. They could go to their rooms and sleep or read. Nathan asked if he could lay down in my bed because his tummy was still hurting. I started to cuddle him but kept getting text message after text message from soccer parents, I'm the team mom and everyone was unsure if there was practice or not with the school holiday. I was annoyed about it but in the end it was just what I needed.

I had reached over to place the phone on my side table and then Nathan yelled, "Mom, it's starting..." and trailed off. At first I thought he was having a tummy cramp and tried to straighten his legs out. But then a second later he started convulsing. Nathan's seizures last for about 2 minutes--120 seconds. Each of those seconds literally feels like a minute. It's awful. Especially because this was the first time I had ever seen him have a seizure. The other time he was at school and I only saw the aftermath about 15 minutes later.

Thankfully we were in bed, so he didn't fall from the ground. It was also very soft, so he didn't bang his head on anything hard. But even so, his eyes roll back as he shakes and shakes ans his entire body spasms. Every single muscle is hard and clenched and he loses complete control of his body. The part that scares me the most if that you can hear him choking on his tongue and the gurgling it makes.

I already had one arm underneath his head before his seizure so I was able to roll him to his side fairly easy. It was hard because I was behind him but I was able to move pillows and his head to position him so he could still breathe. I was also able to call Ken, I am forever grateful I had my phone in my hand as soon as it had started. I called my father too, all while Nathan was still convulsing.

During that 120 seconds I was able to have plenty of crazy thoughts, cry, and pray. It felt like a lifetime. I even remembered how the doctor told me that really even if he couldn't breathe the fact that the brain lost oxygen would be a good thing because in most cases that would stop the seizure and his breathing would resume. That little tidbit of knowledge really isn't comforting though when you are terrified that you may be watching your child die in your arms and you can't do anything about it.

After the seizure stopped, Nathan was heaving and sucking in air. His eyes were still rolled back and he is completely out of it. He's not conscious but at least you hear him breathing. This period lasts for about 10-15 minutes.

As he starts to gain consciousness begins the terrible part of his recovery. He is in pain, and he is awake enough to feel it. Every single nerve ending in his body is firing. He also knows what just happened and is so angry. Who wouldn't be mad that they just lost all control of their body. But he cries out in pain and you can't do anything to help him or make him feel better. This phase lasts for about 30 minutes.

It was truly awful and is really bad for anyone who cares about Nathan to watch. The girls had heard me call for Darin. We told them to stay in the game room, but Darin saw Nathan during this time. I didn't know exactly what to do, if we take him to the ER or what. I actually had to call my Dad and ask him what I should do, I couldn't think very clearly. Nathan's school got an ambulance for him the one other time he had a seizure but I thought that was because he had three of them back to back, had hit his head very hard, and he was unconscious. Honestly, we thought the first set of seizures was just a fluke. After all everything came back normal and the Neurologist said that sometimes it just happens and if he didn't have one for 6 months then we could be pretty confident that it would be a reoccurring thing.

Anyway, Darin had to help me carry Nathan to the car so I could drive him to the ER. Nathan was in so much pain just laying in bed, so when I picked him up I just increased his pain. He was literally screaming like I had just cut off his leg, I imagine every spot where I made contact with him felt like I was holding a burning match to his skin. It was horrific! This is the part that is traumatic for the other children to see. Even though we kept the girls away they can still hear and they caught glimpses of it. They remember it too.

Nathan moaned and cried in the car, every jostle and bump in the road just increased my poor baby's pain. He started to sleep close to when we reached the hospital. The painful phase lasts for about 30 minutes and you can see that as the pain subsides he drifts in and out of sleep. When he is sleeping I finally start to relax and believe that he is okay.

Ken beat us to the hospital. I am so grateful that I had my phone in my hand as Nathan started to seize. I called Ken just steps before he was supposed to walk on the plane. He was already on the Jetway. Ken ran out of there, talked to a gate attendant, and rushed to the hospital. I'm thankful that the gate attendant took care of everything so my husband could get to us as fast as possible.

They admitted us to the ER and ran a few tests. Nothing major, they took some blood and did a Cat Scan. They also asked me 5 or 6 times what it was that I saw and what happened. It got to the point where I felt like they kind of weren't believing me. Especially when the doctor or nurse was like, "Are you sure it was a seizure?" "Are you sure it really last a minute and a half?" "You know you may think it is 1 1/2 minutes but it is really just a few seconds." (I didn't time it, but that was my guess).

Nathan was back to normal, or at least pretty close (he was a little wobbly on his feet). The doctor came in to examine him and ask us the same questions again. Nathan kept telling her how he knew beforehand because he felt tingling in his leg. So she was checking that out and having him walk around. Nathan was in the middle of talking to her and walking around and he cried out, "It's happening again!" and had another seizure.

In a way I am so thankful that he had a seizure in the middle of being examined by the doctor. It's so frustrating for something so terrible to be happening to your child and no one believes you. From this point on no one has ever asked me to describe what it looks like. Also, it was nice in that the doctor timed it. The reason why I think his seizure at home was more like 2 minutes is because the one he had in the hospital was exactly 90 seconds long. This is bad, but I seriously wanted to say to her, see I told you a minute and a half!

The second seizure was not nearly as severe as his first one at home either, but it took a far greater toll on his body. Where the first one he recovered from within about three hours, the second one took him about 16 hours to recover from.

The ER gave him medicine to stop seizures and he was admitted into the hospital that evening. Poor Nathan, had the roughest time. They had to put an IV in during the recovery period where he is conscious but out of it, and also when he is in pain. He tried to fight them with the little strength he had. I felt so badly for him. It's really hard to be so helpless.

The rest of the night he was in and out of a very fitful sleep. Sometimes he would wake up and talk to us and you would think he was back to normal, but then he would say something and you would realize he wasn't. Here he is resting, Ken and I moved the furniture around so we could be next to his bed and I could hold his hand.

That didn't last long because he wanted me to hold him. He was so scared. I slept in his bed holding him most of the night. Until at one point while he was sleeping he flung his arm back so hard and hit me that I cut my lip on my teeth. He was calmer so I crawled back in bed with Ken for an hour. Then the nurse woke me up because there was blood on Nathan's pillow by his mouth and she was afraid that he had another seizure in his sleep.

It turned out that he had not had a seizure, the blood was not from my mouth, but it was because he had torn out his IV. Then we couldn't find the IV either, so we all woke-up and had to look around the bed for it. 20 minutes later when Nathan went to the bathroom it was stuck inside his gown towards the bottom. Kind of random. The next morning as they were doing Nathan's vitals, changing sheets, and stuff Nathan started talking randomly. He was conscious but clearly still out of it. At one point I was holding his wrists trying to stop him from pulling at one of his cords and he looked me straight in the eyes and in a kind of snotty attitude said, "No, I don't! Mom says I can do whatever I want!" It was clear that he was mistaking me for Darin. It sounded just like something he would say to his brother and totally with the attitude. The nurse totally chuckled and I was kind of taken aback, but it was pretty funny. All morning long he would say just random things where you could tell he was talking to a sibling or thinking he was at school. Mostly cute stuff, sometimes not so much. I could see that he has a strong bond with Darin though, because Darin {by far} dominated the random sentences Nathan would say. Around 70% of them were about things where you knew he was talking to Darin.

Nathan was back to normal around noon. He still couldn't walk without stumbling but he had recovered from the seizure. Lola brought him a 20 piece Chicken Nuggets and he polished off practically the whole thing. We spent the next 7 hours in the hospital getting tests done or waiting to get them done. The most important tests were an EEG and MRI. We spent the time in between cuddling, napping, watching movies, and taking a few walks. It is hard to keep Nathan down. He kept wanting to jump out of bed like normal. He would just lunge himself off and Ken or I would have to jump up and catch him. He is one lanky, tall boy now.

The children's hospital near us is really nice. They have all sorts of stuff for the kids. We could check out games and movies from them and they have people who bring around stuff too. They brought Nathan a Bingo game to play. All the patients in the hospital just turn their TV's onto their station and can call in when they win. It seriously made his day! There were like 30 winners before him, he was the 3rd to last person to win. Later in the day a lady came around with a cart full of prizes. Nathan took home a Playstation game, he thought that was pretty cool.
All of Nathan's came back normal just like they did the time before. Nothing shows up in the MRI or EEG. Basically they diagnosed him with epilepsy, gave us some education, and sent us home. Epilepsy is basically having 2 or more seizures where there is no known trigger or cause. Nathan's seizures are generalized tonic clonic or more commonly referred to as a Grand Mal seizure. It's what you would expect to see in a movie or TV show.

We were given the option of starting him on medicine to control them. But given that this was his second episode, which came 10 months after the first we weren't really too sure about it. There are alot of side effects, it takes a number of months to figure out the right dosing for his body, and more importantly we weren't feeling like Nathan would be able to commit to taking them twice a day on a strict schedule. If he misses a dose he would actually increase his chance of seizures. The doctors were very upfront that he will most likely have a handful for seizures throughout puberty. But Nathan really didn't like the idea of the medicine right then.

So a little over 24 hours after we were admitted to the hospital we went home. Life has changed alot for us. For one thing we bought the nicest, most expensive, most sensitive baby monitor we could find and put that in the boys room. It's so sensitive that if they turn over in bed our reciever will vibrate and buzz. You can't hear the sound, but the vibration picks it up.

It took a good three or four weeks before I stopped crying everyday. Ken and I have been on pins and needles scared of when another seizure will hit him. Every stumble or bump Nathan makes gives us a mini heart attack. Just think of all the times your kids chase each other around the house and bump into the wall. It's probably more then you think, at least it was at our house. Until we started being on high-alert for every little squeal or moan. We also taught the kids a seizure plan and rehearsed that over and over. Basically what they should do if they ever see Nathan having a seizure. Both girls now know how to run around the house screaming for help, or even how to call me on my cell.

We've all had to adjust and figure out what this means to our family. And mainly we have tried to become okay again. My children are wonderful and they really do care about each other. It's super hard on Nathan, but it's also super hard on everyone who loves him. Sometimes out of nowhere, weeks later, the girls will say something about Nathan having a seizure and what they felt like when we were gone. They were so worried about their brother. Darin wouldn't sleep in his room without Nathan. Lola and Papa took good care of them so Ken and I could be at the hospital with Nathan but there is still the stress of it all.