Monday morning Eli woke up late and was really sleepy. I got
the other kids off to school, ran three miles and he was still super sleepy.
He didn't want to get dressed, he didn't want to do much. This is
so out of character for him. He is usually up first and ready for school
before the other kids leave. So I let him stay home. Maybe he just
needed some extra rest from the weekend.
Around 11, he threw up once. It was mostly spit, but then I
figured he was coming down with some sort of stomach bug. Around 12:30 he
threw up again. He didn't have a fever or any other symptoms. The
doctor and staff at the first hospital we went to thought he must be getting
sick and that brought on the seizure. But looking back I don't think that
was the case at all. (more on that later)
He wanted to watch netflix and lay in bed. I sat in the tv
room next to his bedroom and wrote a couple blog posts and scheduled some posts
for My Reading Spot. I could see him from where I was sitting.
Around 1:30 he made a sound like a cough. I thought maybe he had
thrown up again so I asked from my seat if he was ok. He didn't reply so
I went in to check on him and he had thrown up some spit and was not
responding. He was seizing.
I yelled for Wade who came running down. He told me later he
was upstairs helping the big kids get started on their homework when he heard
me yell and he had the though - either Eli has thrown up everywhere or he was
having a seizure. He wasn't sure why he thought that - but he was.
Wade took over and told me immediately to call 911. We've never called 911 that fast for a seizure. And while he doesn't have a history of one, I knew our other kids have had ones that last a super long time. Wade said he wasn't going to mess around. I talked
to 911 and told the kids what was going on. Seizures seem to last forever
when you are watching them. Eli was not stopping. He didn't stop
until EMS got here, gave him a nasal treatment of Midazolam. (We have
this emergency medication for Noah, but it didn't even cross my mind to give it
to Eli, but we wouldn’t have known the dose anyway).
EMS took vitals but decided to take him to the
hospital because by now the seizure had lasted about 10, maybe 15 minutes and
it wasn't stopping. It finally calmed down and stopped when we placed in
him the ambulance. He lost continence and his body was
still and his eyes were shaking to the left side. It was such a long
time.
I left Gage in charge of all the kids and rode in the ambulance
with Eli. Wade came in the car and I called his Dad to tell him what was
going on and that the kids were at home by themselves, and a little freaked
out.
At the hospital they ran some tests, blood work, urine sample, did
a CAT scan. They gave him some IV fluids. I'm sure that is all you
do for a seizure until the person wakes up. I've been there before. There
isn't much you can do but observe and wait. But he wasn't waking up.
Maybe about 2 hours later I noticed he was doing something funny with his
mouth again and we noticed he wasn't responding again. His eyes were shaking to
the left side again. Wade ran out and told the nurse at the station and they
told us they would get the Doctor. I realize that a seizure feels like
forever, but it really felt like forever for them to do anything. We had
to ask a second time if anyone was going to come help us.
They weren't busy. I believe we were the only patients in the ED. (Maybe one other patient?) We had made the choice to go to the
brand new hospital closer to our house. It was a nice facility but with that
you also get growing pains. Later that day Wade told me that we very well
could have been the first child they have ever seen with seizures. I'm
sure they were all figuring it out. But we needed to give him the emergency
drugs. I feel like I typically am a person who takes the side of the
doctor. I always give them the benefit of the doubt, I know they are
human, they try their best, they work hard and make fast decisions and are just
doing the best they can. I am married to one. But I have never
stood in an emergency room watching my child seize and felt so alone.
If I am in the emergency department and my child is seizing, alone
is NOT a feeling I should have.
It continued on for 10-15 minutes. In the mean-time his left side,
particularly his hand was getting worse and worse. He also lost continence
again. They had to give him 2 doses of Ativan and a dose of Keppra. Finally...if you've ever witnessed a
seizure, you know it seems like an eternity - finally he stopped and was just
sleeping.
The staff there kept complimenting us for keeping it all together.
I do NOT have it all together. Trust me. But I've seen Noah
and Avery seize. I've seen my own sister seize. It's NEVER fun to
witness a seizure. It's even worse when it's your kid. But I can
cry about it later. I can't lose it in the moment. If I cry too, then
who will take care of them? I don't have it all together. I cried a
lot that day. Trust me. One of the nurses randomly gave me a hug
when we left and I lost it.
The ED doctor then put together the orders to transfer us to
Primary Children's hospital. As much as I didn't want to do this, Wade
said it was a good thing. If she was not comfortable with us there, then
we needed to be in the best place for Eli. And that is Primary
Children's.
The same EMS guys came back and transferred us to Primary's by
ambulance. They seemed a little disappointed to see us when they showed
up. They told us they hoped that we had gone home. We had too.
At this point Wade went home. He took care of the kids, our
neighbor brought in dinner and he put them to bed.
Eli got checked in to the ED at Primary Children's...where
everyone helped me and checked on me so often. They said all I had to do
is yell if he had another seizure and they would all come running. I saw
so many doctors, nurses and staff I was hardly ever alone. I felt so much
better being there.
I always joke that Primary Children's is like a black hole, or a casino. If you’ve
ever spent anytime there you probably understand. Not many windows, not many clocks, they run
on their own time table, you never know what time it is, or what time you will
leave. I didn't have any service on my phone. Not one bit. My phone
said “NO SERVICE” I had to use the hospital phone to call Wade to tell him we
made it. I didn't have anything but my purse, my phone (which was
useless) and some extra pants for Eli. So I sat. I thought about
writing some blog posts out in the notes app on my phone, but I couldn't wrap my
head around anything. I looked at the kindle app on my phone, but didn't
have anything downloaded. I don't even have any good games on my phone, ask the
kids. The only thing that would work was my scriptures. So I read those.
And I watched Eli sleep.
After a couple hours we were transferred to the Rapid Treatment
Unit for the night. And when the CNA checked me into the room she let me
know I had the only room on the wing that had phone service! I could have
hugged her. Hallelujah! I had to sit right next to the window to
get it, but it was better than nothing.
Wade came up after getting the kids to bed and brought me dinner
and a bag full of essentials...clothes, toothbrush, and DIET COKE. The
nurses all agreed he is the best husband ever for bringing me a bag full of
cans of diet coke. He hung out with me until around 11. Eli was
still just sleeping away. He did develop a fever in the evening once we
got to Primary's. This happened once with Noah too, a fever AFTER the
seizure. One neurologist in Washington explained it to us that that was
common because the body is fighting back after the seizure, it's recovering.
I don’t' think Eli was getting sick with any flu or stomach bug. He
had a small fever that night for a couple hours but other than that he has
shown no signs of being sick.
I think he was trying to wake up because throughout the night he
would randomly sit up (even though his eyes were still closed) and then face
plant into the side of the bed or whereever he would land. They had
padded the bedrails for him, which I was so thankful for. I didn't sleep
much because I tried to listen for him all night and would try to catch him and
help him lay back down. Around 4:30 the nurse came in and was taking his
vitals and he woke up wondering where he was and what was going on. He
really wanted that IV out of his hand!
We spent from 4:30 on awake. He ate some crackers and juice.
We watched some movies and the Disney channel. He still was pretty uncoordinated. For example he wanted to get out of his bed
and walk down the hall to see the movies.
But when he got out of bed he walked right into a wall and looked at it
like “Where did that wall come from” He was really hungry and couldn’t wait to
order breakfast. He ordered eggs, bacon,
and 5 pancakes. He ate almost every
single bit of it all. Then he had
chocolate milk and juice and hot chocolate.
He also ate half a bagel with cream cheese from the snack cart. I totally DON’T THINK he had the stomach bug
or flu. No one ever wakes up less than
12 hours from a stomach bug and eats all that food. When we got home from the hospital he ate
lunch and then 3 pieces of pizza for dinner! One of my best friends brought by
donuts today and he has ate 3 so far – and is just eating so much!
In addition to that, I just don't have a gut feeling it was the flu or a big that caused this. After reading though some of my older blog posts everything is so similar to Noah's story. Noah had a prolonged seizure right after throwing up in his bed once. I remember it wasn't really food throw up either, if that makes sense. It was mostly spit. A nurse yesterday said it could be the brain, the seizure causing him to throw up. Also, Noah was 5 years old and 4 months when he started having them without a fever. Eli is 5 years old and 3 months.
They did an EEG test which didn’t show much. The neurology team said it shows some slowing
in one part, but nothing major. Noah’s
EEG’s have always been inconclusive. I
would bet Eli’s are really similar. Noah’s
seizures were long in time like Eli’s and they were very similar in the way
they looked too. Noah was 5 when he
started having them without a fever too.
The only difference is Noah had febrile seizures starting at 12
months. Eli has NEVER had a problem with
any seizures. We joke that he was our
little surprise baby – but the surprise baby that came with no health problems
at all.
(they gave him play dough that he got to take home - he had such a good time playing with that)
By the end of the morning we were released with orders to start taking
Keepra daily. I am completely fine with
this plan. I wasn’t going to leave the hospital until they gave me prescription
for it anyway. When Noah started having
seizures similar to this we waited. We
didn’t want to start daily medications. He
had a couple ones a couple months apart before we realized that he did need
daily medication. We were slow to start
it. But he took it for 2 (almost 2 1/2
years) and was seizure free. Almost a
year ago we weened him off and he has done great. Because of that the team of neurologist and I
all agreed that this would be a good action plan for Eli too.
He will follow up in the next couple days with Noah’s neurologist
to confirm this plan.
Because the seizure was pretty much on the left side of his body
and he had so much medication he didn’t have the best coordination on
Tuesday. It is improving but he still
wobbles a little bit walking. He fell
off the couch Tuesday afternoon and then jumped up and yelled ‘I’m okay mom!’
I am a big believer that no matter how bad your day is that there
is good in every single day. If you look
you can always find the Hand of God.
This happened on Monday.
Wade’s office is closed on Monday and he was home. This happened just 20 minutes after the big
kids came home from school. They are big
enough and responsible enough to take over and watch Lucy. Gage really did such a great job. He later told Wade that night that Lucy was
having a hard time during the afternoon and he couldn’t stop her from
crying. So he went outside and got some
snow in a bowl and she played with that at the table for a long time. He was such a great brother to step up and
take care of everyone, even though he was worried and scared for Eli too. That’s a lot to ask, but he did a good job. I
am thankful that I didn’t go upstairs to talk to the kid after school on Monday.
I had the thought to go talk to them and welcome them home, but I also had the thought
that I needed to stay downstairs with Eli.
I am thankful for modern medicine. I am thankful this isn't our first time dealing with this. It doesn't get easier and it's espcially hard this time because Eli's never had any problems. But I am thankful I have a prior knowlege to what is going on and how to handle this. I am thankful for the love and support we have felt. Eli has been spoiled since being home. He has had so many people ask about him and
brought by treats, toys and balloons! He says this is like his birthday! He is so spoiled! A friend dropped off a
12 pack of diet coke on my porch and it made me cry!
This completely caught us off guard. But I have felt prayers from family and friends all across the country and and I know that has strengthen us and helped us get through this. Eli is home and will get to stay home with me for the week. No doctors told me that, I just am not sure I want to let him out of my sight for a while. He can be my little buddy while I watch him and see how he adjusts to this medication.
(just a couple hours after being home I went to change laundry and came back and couldn't find him on the couch or anywhere - he was sitting at the table drawing this picture of Eli and Mom - holding hands. Since being in school he usually draws pictures of himself and Mrs. Gasser holding hands, so I'm glad to see I'm back in his life again.;)
I am so thankful that since he woke up his little funny little personality and happy temperament have shined through. When the hospital employee gave us the choices from the snack cart Eli told her he wanted a bagel and hot chocolate. Then he paused and said (with a funny sneaky little grin on his face) that he wanted a bagel and coffee. Then he bust out laughing and said “I don’t even know what coffee is mom!”
(we don’t drink coffee for those who don’t know that)
Funny little guy.
We are so thankful for him and love him tons.
(if you want to read more you can click on the seizures label at the bottom of this post, or on the sidebar. I'm not sure that shows up in the mobile view, but it will in normal web view. I always need a tissue (or two) when I read through these posts)
(if you want to read more you can click on the seizures label at the bottom of this post, or on the sidebar. I'm not sure that shows up in the mobile view, but it will in normal web view. I always need a tissue (or two) when I read through these posts)







