Thursday, March 4, 2010

the seizure.

i have written before about caleb's first 2 years of life. he experienced seizures starting at 10 days old, along with other physical delays that caused him to need to wear orthopedic braces, use a walker, work with physical therapists and didn't take his first unassisted steps until the day after he turned 2.

but there was one day that was more difficult for me than the entire two years combined. i've had a couple of friends ask me about what happened when caleb had a 35 minute seizure at 18 months old and for some reason i've never really wanted to write about it. mostly because when i write, i re-live the experience.

but i've been thinking about it lately and feel like i'm ready. and i think it's important not only for me, but for caleb to read about one day.

so, here it is.

caleb, 18 mos

january 6, 2007

caleb had been getting over a cold for the past couple of days, and was seeming to feel better. he'd had a low-grade fever, but no longer needed tylenol. after dinner, i had gone to exercise at the gym, while ben played with caleb and got him ready for bed .

when i got home, i walked through the door and things were quiet. i remember what i was wearing, a pink hoodie, a white tank top underneath, black yoga pants.

the front room was messy, and there were DVD's all over the floor. at 18 months old, one of caleb's favorite things to do was open up the cupboard on our entertainment center and pull all of the DVD's out. i used to have to clean them up 4 or 5 times a day.

i figured ben was giving caleb his bath, so i walked down the hallway to the bathroom, but they weren't in there. the light in our bedroom was on.

as i walked in the bedroom, it took a minute to realize what was happening. ben was on his cell phone, and caleb was laying on our bed, on his side. i remember what he was wearing. a navy blue & white striped pajama shirt from old navy, and navy blue sweat pants.

i stared at him. looked at ben. and still couldn't understand.

caleb's eyes were half-open, and moving back and forth from side to side, but not focusing on anything. his knees were pulled up almost to his chest, his feet were together side by side, and his legs were moving up and down in a repetitive motion. his arms were bent, his little hands clenched in fists. his arms also moved in a repetitive motion.

out of his mouth came the strangest sound. it was like a grunt, and then a gasp for breath. over and over and over again.

"he's having a seizure," ben said. "and he's not coming out of it. i have 911 on the phone and they're sending an ambulance right now."

i completely lost my mind. i knelt down on the bed and started crying and pleading with caleb.

"caleb, it's mama. please look at me. caleb, please. please."

his eyes would not focus on mine, but just remained rotating from side to side.

i became hysterical and started pacing. sobbing as i went up and down the hallway. i would stop in the family room, drop to my knees and start to pray to God. then in mid-prayer, i would get up and go back to the bedroom and drop to my knees to beg caleb again. when he wouldn't respond i would get up and walk down the hallway to pray.

ben stayed on the phone with 911, explaining what caleb was doing now, that he hadn't changed.

i was able to ask ben what happened, how this started.

{he explained that he and caleb had been playing in the family room, and caleb was pulling the DVD's out of the cupboard when he closed the door, and pinched his own finger.

ben had been sitting just a foot or so away from him, and when caleb pinched his finger, he let out a howl. ben looked over and reached out to comfort him. but as caleb yelled out, he didn't take a breath. his eyes rolled up in his head, and as his body collapsed, ben caught him. ben tried to breathe into caleb's mouth to get him to take a breath, but he still didn't. instead, the seizure began.}

i called carrie & troy, our family who lived just minutes from us.

troy picked up the phone.

i tried to tell him through my sobs what was happening. he couldn't understand me until i was finally able to choke out in one breath, "CALEB IS HAVING A SEIZURE AND WE CAN'T GET HIM TO STOP. PLEASE COME OVER NOW."

"i'll be right there," was his reply.

at this point, i didn't know that carrie wasn't home. i didn't know that troy's two kids were in the middle of taking a bath, that troy had to call his next door neighbor to ask for help so that he could help us. i am so thankful for his quick reaction, and for the help of his neighbor amanda.

all i knew was that before the ambulance could even arrive, troy came to the front door. i was a complete mess and unable to pull together a coherent sentence, so i just pointed to the back bedroom where ben was still with caleb. troy ran.

they administered a priesthood blessing, and then troy came back out to the front room with me to wait for the ambulance. he was crying, and gave me a hug to tell me it was going to be okay.

by now caleb had been seizing for about 15 minutes.

an average seizure lasts anywhere from 3-7 minutes. any longer and there is an enormous increase in the risk of brain damage and possibly death. (i didn't know this information at the time that this was happening, and i'm grateful i didn't.)

the ambulance came, sirens blaring and lights flashing. the paramedics lifted caleb and took him to the back of the truck. ben sat in the back with caleb, i was in the front. (this was a good decision based on the state i was in. ben was able to remain calm even though he was extremely worried.) troy followed behind the ambulance in his car.

once caleb was in the ambulance, the paramedics gave him some medicine that stopped his seizure. ben told me he had stopped, and i began to calm down. however, as his arm was pricked to start an IV, his body started back up, and the seizure continued.

the ride to the hospital was horrible. it was extremely icy that night and we had to drive slowly. i sobbed my eyes out and prayed to God the entire time to heal his little body and help him to come out of this and still be my caleb.

by the time we made it to the ER, and he was rushed in, the seizure was going on 31 minutes. there was now a breathing tube in his mouth, IV in his arm and he was hooked up to several machines. there was a team of nurses and doctors surrounding him. they administered more medicine to him.

ben and i stood to the side, with our arms around each other.

about 5 minutes later, the seizure finally stopped. caleb's body lay still.

at this point several family members had been contacted and were on their way down. troy was there, and carrie was on her way.

we were told by the doctor that we wouldn't know how he would be affected until he woke up and the medicine had worn off. we were also told that he would be exhausted and would probably sleep for a while.

we waited.

family came in and we hugged and cried and they waited with us. more time passed, and finally caleb woke up. he was completely irrational and was thrashing around, and crying. he tried to pull out his IV, so the nurse wrapped it up with medical tape.

he was moved to his own room, and only 2 adults were allowed in at a time. we appreciated all of the support of our family, but also knew that there wasn't much they could do at this point. so eventually they left, except my mom. i was extremely grateful she had stayed, and for all of the help she provided.

caleb drank a little and we tried to get him to eat some crackers, but he wouldn't. he finally went back to sleep. ben and i tried to share the small hospital bed and slept in the room together. the night was long and hard, with him waking up frequently upset and unable to be comforted.

we spent the next day in the hospital, while tests were run and we looked for improvement from caleb. he started to become more like himself, saying words and asking for us to hold him. but he wasn't completely back to normal. he was aggressive and still irrational. he did a lot of thrashing around and seemed like he was constantly dizzy.

we were told that this could also be a side-effect from the anti-seizure medicine he had been given, but that the doctors felt it was best for him to stay on the medicine until he was able to have an EEG test done in a week.

the following morning, on a monday, he was released from the hospital and we were told to watch him carefully. ben had to go to work and i was grateful that my dad was able to be there to take caleb home with me, because i was completely freaked out to bring him home by myself. i couldn't believe that this had come from a pinched finger and was paranoid that if he hurt himself or became too upset, this would happen again. i remember wondering how to be a mother to him, when i knew i couldn't protect him from everything.

it was a hard week.

i was a bundle of nerves and anxiety, not to mention traumatized. i couldn't sleep and was scared to leave him alone, even just in a room by himself. every time i relaxed i would close my eyes and would picture his little body curled up with his arms and legs doing those strange jerking movements.

the medication and its side-effects still affected caleb a lot. he was not the same little guy who was easy and fun to be around. he slept about 18 hours out of the day, but not all at the same time. he would be awake for about 45 minutes, then get really aggressive and irrational and need to take a nap for about an hour. we did this all day long and it was pretty exhausting. he was constantly dizzy, throwing his head back and falling over easily.

at the end of the week we were sent to primary children's hospital for the 3rd EEG of caleb's life. the first two happened when he was under 6 months old and it was difficult then, but this was by far the hardest one.

the technician had to stick electrodes all over caleb's head, and then wrap it tightly with gauze in order to keep the electrodes secure. for the first two EEG's, we were supposed to keep him awake and upset (because that was when he would have seizures, when he was awake as opposed to asleep.) this time we were asked to bring him sleep-deprived and do our best to get him to go to sleep while his head was covered in wires.

not an easy task.

but eventually he fell asleep, and the testing began. when it was over, the neurologist met with us to explain that there was no seizure activity going on in his brain. we were grateful, but worried.

i've written before about feeling frustrated when there is not a clear diagnosis. it's like you exhale a very relieved breath of fresh air that it is not something serious, but then up come the questions. will this happen again? what are the chances? what do we do if it happens again? should we keep him on this medicine?

and what can be so frustrating about no diagnosis is that the decision is usually left up to you. or at least this is what we experienced for the majority of caleb's life. we were told that because they didn't know the source of the seizure, yes it could happen again. they had no idea what the likelihood of that would be. the medicine would protect it from happening again, but there were definite long-term effects from it that were quite severe.

we were also told that we were very lucky that it looked as though no brain damage had been done.

so the decision of what to do was left in our hands.

the fear of caleb having another seizure was definitely there... but the fear of having this terror of an 18 month old continue, as well as the long-term damage that could be done, was greater.

after talking about it, we decided not to fill the prescription and say a lot of prayers that it wouldn't happen again.

as soon as the medicine left his system, caleb returned. he could speak normally, stay awake, and came back to being our calm and easy-going little guy.

our prayers were answered, and he has not had a seizure since that day.

it has taken a looooooong time for me to work through this experience though. i've realized that i am someone who stuffs fears inside and tries really hard to cope with the day-to-day things without ever really dealing with the trauma. but it has leaked out in my parenting. i have had a hard time letting others baby-sit caleb, i over-stress and over-worry. and when it came to parenting him, i constantly felt on edge. up until about a year ago.

it was then that i was able to see reality for what it is now:

caleb is a healthy, happy and smart boy.

i can no longer keep him in the protective bubble that kept him alive for 2 years, and by trying to do it i am holding him back.

i'm grateful for the lesson i have learned as a mother and the blessing i have had to watch the strength and resilience of a boy who has overcome so much.


K Harker said...

Oh Lyns,
I just cried my eyes out reading this. I think ANY mother can say they would react the same way after such a thing happened to their child.

I know I was, and some times still can be a little over protective of my boy just because of his rough start in life and his was no where near as rough as Caleb's, but I understand those feelings a Mother can have to just put up a bubble around their children, especially after traumatic things happen.

I'm glad you are at the point of letting those protective instincts go a little, and I think that you, seeing it now and overcoming your fears now is an amazing step! It was not that long ago that you went through this hard time and I'm sure it feels like yesterday to you, which is why it is amazing to me that you are dealing with it so well, even now.

I know I'm similar in that I suffer my fears inside, I hold them in and don't really talk about them. I just go through the motions day to day some times. I think that is kind of a normal human reaction when it comes to dealing with Trauma or stress, but I think you are doing it right, in that you are coming through it and seeing reality and taking the right steps in the right direction.

You are an amazing Mother, I look up to you for that! You should be proud of yourself.

AND your kids are freaking ADORABLE, just thought I'd add that one in ;)

Thanks for sharing lyns

Rachel Chick said...

I can still remember the stress and frustration that I could see in your face when we all got together for Mike's wedding that year . . . I wished so hard that I could make it better. I'm so glad that he is healthy. That he is happy. And that you've been able to overcome so much of the fear that comes from such experiences. Nels and I love you all so much! We're so thankful to have you as friends and have you in our lives -- even if only virtually :) for now. :)

Clancy Pants said...

Thanks for sharing... I'm so sorry that you've had to live through something so intense and traumatic. As a mother that is something I can't imagine. I'm glad you've gotten some peace in the last year.

Joel and Carrie said...

Were you trying to make me cry? Goll that was intense to read not to mention the tears I as choking back. Thanks my dear! :) I really feel like that experience was a blessing in disguise for you and the rest of us because you write so eloquently of it that inspires us. You have a neat family! I love checking you guys out!

Brian & Chelsey said...

Im still crying...Lyns...that is the scariest thing to have to go are so brave. I remember what i was going through on a daily basis when brax was in the hospital...many nights spent crying myself to sleep, panicing when the hospital would call etc etc... praying was my biggest ally (sp?) thats all i did and still do. I know that with caleb those blessings he got from troy and ben were the best "medicine" so to speak for caleb. same as when brian and my dad did the same for brax, those are what made him to be the healthy happy lil one he is. i to find myself being soooo over protective and i know that that is something that is not going to completely go away. i dont think something like that ever does for anyone for has been through these types of experiences. but as you said we cant hold them back. I know for me it will be sooo hard to not be overprotective! Lyns you are awesome and so inspiring...thank you for sharing this. Im so glad that he is doing so awesome and he IS a healthy Happy little boy! CUTE to! :) Thanks lynsey for sharing this!

Nicole said...

I knew that Caleb had a variety of serious health problems, but I had no idea there had been such an intense and terrifying seizure. I applaud you for following your heard, and doing what was best for him (in this case, avoiding the anti-seizure meds). I'm sending you a big virtual hug as I wipe my eyes.

P.S. He looks so much like Ben in that recent pic!

Kristen said...

Hey Lynsey! I love you and admire you so much! I can only imagine the hearthache you faced in order to re-live that day and write it down! I felt like I was a fly on the wall--I cried with you and prayed with you the entire time I was reading! I am so impressed with the way you dealt with this terrifying experience. You did the right thing and Caleb is better for it! He is so handsome and full of life!! I understand you being protective and appreciate your honesty. Being a parent is a challenging thing. Thank Heaven we have help!! You really inspire a lot of people and I appreciate your willingness to share the things you've gone through! Love you and miss you! AZ sounds great to me!!

ohmylanta said...

What a scary experience. I can't even relate to such a traumatic night. My baby had a febrile seizure once, but it only lasted 30 seconds. It was the scariest 30 seconds of my life. I am SO glad that Caleb got through that without a problem. I'm glad you can write about it now. Parenthood is such a crazy learning experience. I'm so glad we can be strengthened by each other.

Isn't it great that men (most men) can stay calm in emergency situations? I am always such a mess - but my husband can think straight and think fast! Good thing!

ohmylanta said...

ps. Caleb is SUCH a Handsome boy. Seriously he is adorable. With parents like you and Ben he's bound to have a fabulous personality too. Can we just plan to introduce him to one of my cute girls in about twenty years? ;)