Jan 27 Seizure

It’s 1:24am on Friday morning, January 27, 2012, and I’m woke up by Ryan crying. I flip on a small night light next to him and realize he’s got vomit around his neck down the right side of his face. I pick him up and turn on the hall light to head to the bathroom to splash water on his face in an attempt to clean him up. He’s still got his eyes closed and he’s still crying. I take his clothes off and make sure the puke is cleaned up a bit. I notice how hot to the touch he is…he definitely has a fever!

He’s on my left hip and I realize his eyes are still closed, he’s still crying, and he’s not holding himself up. At all. Not his head. Not an arm. Not even gripping my finger, shirt. Nothing. He’s dead weight…CRAP! – He’s seizing!!

By this time, Britney has woke up, is still laying in her bed and with the look on her face, I can tell she knows exactly whats going on. She’s unfortunately been through this before.

I go to the kitchen and grab his seizure medication that is rectally given to him when he is seizing. I have a small freakout, kind of still sleeping – How?! I dont know… and realize I have to do SOMETHING!

I put Ryan down on my bed, rectally give him his medication realizing he’s got diarrhea in his diaper – change his diaper, at the same time – call 911 with my cell phone, tell them to get here ASAP as my son is having a seizure, he DOES have epilepsy and we need to get to the hospital ASAP. She tries to calm me down as I call my mom on my home phone. She answers, obvious that she’s in bed and I’ve woke her as well. I desperately tell her that Ryan’s seizing, 911 is on the other phone on the way, and I need her to come be with Britney.

I need her so much at times like this!!! Thank God she’s so close. Thank God she’s willing to help me when I need her.

I go to Britney’s room and tell her things are going to be ok. She asks if Ryan’s having “another” seizure. I tell her he is but it’s going to be ok, Grandma is going to be with her, I’m going to have to go with Ryan to the ER, and she will be ok! I reassured her I love her very much and I asked her for a huge hug because I needed it. I told her how proud I was of her for how strong she is, and told her I love her. She called her dad to talk to him.

I open the front door as I see the lights coming through the dark living room windows.

Ryan’s still whining, still has his eyes closed, and is a bit stinky. (The seizure medication makes him gassy.) It’s very quickly I realize there are more than 1 cop cars in my driveway/outside my house…probably 4?

While I was holding Ryan, my mom assured me he was starting to come around. He was looking at her as she was talking to him and things were looking up. My mom took Ryan and told me to get some things together. Fumbling around the house, I put together my toothbrush, tooth paste, put socks and shoes on, I grabbed extra clothes for Ryan, our jackets, while two or three of the cops left; One stayed until the EMS/Ambulance showed up. The two women walked in looking like they had just woke up as well…my mom was holding Ryan. I grabbed him, the blanket around him, my purse and the things I had gotten together and headed out to the ambulance.

While in the ambulance, the EMT’s were getting his vitals, asking questions of what the seizure looked like, trying to start an IV, getting the IV in his left ankle and then her hand slipping the needle out of his vein. 😦 Seeming like an hour passed since the seizure, we headed to the ER. We called Ryan’s dad on the way there so he knew we were on our way to the hospital and Ryan was ok. Ryan babbled back at his dad.

Once in the ER, they take his vitals, ask me questions about his seizure history, his medical history, he vomits a couple more times; which is mostly flem, he’s put on o2 for his de-sats (in the 80’s), and they try and start an IV again. And again. And again. Poor kid has my veins. Small and rolling. After trying his arms, left ankle, and even both veins in his neck (No one has EVER tried those veins for Ryan!! I was furious!) they realize they aren’t able to get it; they’ll wait for the transfer team from Children’s to start it. With the vomiting and no other output in his diaper (other than gas), they’re starting to worry about hydration. Not only that, but they had been requested by Children’s to load him too! (Loading Ryan means when he has a seizure, his anti-seizure medication -about 40times the regular dose- is given to him via IV in a matter of 20-30 minutes.)

First time in a Children's Hospital Ambulance!

 Once the transport team, a man, woman and the ambulance driver, from Children’s showed up in their blue suits, the woman tried to start an IV another 2 times…without any luck! The transport team was just as suprised as I was to see the ER doc tried the IV in his neck. (A bruise already started to appear!) That doesnt happen unless there is an emergency and it’s absolutely necessary. So off to Children’s we went, for the first time in the Children’s Hospital Ambulance.

 Once the transport team, a man (Mark), woman (Mary) and the ambulance driver (Jordan), from Children’s showed up in their blue suits, Mary tried to start an IV another 2 times…without any luck! The transport team was just as surprised as I was to see that the ER doc tried the IV in his neck. (A bruise already started to appear!) That doesn’t happen unless there is an emergency and it’s absolutely necessary. So off to Children’s we went, for the first time in the Children’s Hospital Ambulance.The ride up to Children’s was a different one for me. Normally, I’m able to sit in the back and be able to hold Ryan’s hand, see, and watch him the whole time. This time, because they had 2 on the transfer team and one driver, they needed more room incase Ryan would need their assistance in the back. There was, however, a screen in the front of the ambulance that showed what was going on in the back of the ambulance. I saw Mark turned on a movie (Dora) and Ryan was passed out within minutes of being in the back of the ambulance. Flying down I-43 at about 85mph, we got to Children’s in probably 30 minutes. We walked through the ER – where I thought we would have been – right up to the 8thfloor in the EMU (Epilepsy Monitoring Unit). They had a room ready for us, but instead of a crib this time, they had a bed for Ryan. Joking, I told them I could take the bed and they could bring a crib in for Ryan when they found one. Instead, we hung out in the hallway waiting for Ryan’s crib.While waiting for the crib, the Resident on the floor came over and asked me the same set of questions, along with multiple others. She seemed concerned about the seizure but also of his cold. She made it very clear they wanted to get an IV started incase Ryan would need an IV drip, or have another seizure where they would need to give him anti-seizure medication right away. Once we had a crib in the room, Mark and Mary were on their way to help another child – but left Ryan with a brand new blanket from Project Linus! It’s absolutely beautiful…and once washed, Ryan will love it even more so it’s not so stiff.

We got settled with the nurses trying to get an IV – again – with no luck. They had to call another nurse from the ER up to try…she FINALLY got it! By this time, it’s about 730am, we’re in the middle of nurse schedule changes; Ryan and I are exhausted. We play for about 20-30 minutes with a few books we grabbed from the play room, and the nurse brought Ryan a beanie baby for being such a trooper too! The new nurse on the daytime schedule took Ryan’s vitals and I tell her once we’re done with everything, I want to try and quiet things down to rest a bit. She tells me Ryan is able to try and eat or drink if he’d like and that the lab should be up at some point in the next two hours to draw blood for a Keppra level.

Sleepy Reading Ryan

After another 15-20 minutes of playing and reading, Ryan and I cuddled a little bit watching some early morning cartoons. He guzzled his milk down like he hadn’t drank anything for a week! He was starting to get pretty sleepy so I set him down in the crib, cuddled him in, shut all of the lights off and turned the TV down so he could try and snooze. I informed the nurse that we were going to try and get some shut eye. She promised to only bother us if absolutely need be. Once I saw his eyelids getting heavier, I too tried to get comfortable myself.

After about an hour of dozing on and off, I woke up by the daytime resident. She came in the room all chipper and it really irked me! She asked if we were still sleeping to which I responded with a glare saying we only had gotten maybe 3 hours of sleep in the last 36 hours. She said she needed to ask some questions and take Ryan’s vitals. I was so tired, I just wanted her to get out and leave us sleep…but this was best for Ryan!

Once the resident left, I hoped Ryan would go right back down to sleep; it didn’t happen. He was ready to play and read some more so I ordered his breakfast!

Aunt Beth came to be with us shortly after Ryan finished his breakfast. The kids and I are so blessed to have such a wonderful woman like her in our lives; and Ryan is always so happy to see her when she’s around. This is a woman who got Ryan to smile and start dancing again after his major brain surgery after his first seizure in the PICU! They have a bond and connection that is unbreakable and will be there forever!!

The nurses came into our room and we questioned when the neuro team would be making their rounds. We told them we wanted to be apart of the rounds so we knew what their plan was. They agreed and told us it could be anywhere from 1 hour to multiple. I was hoping it was closer to the 1 hour mark.

During the next couple hours, Ryan was in bed watching TV, reading books, playing, and also waiting on the neuro team.

Ryan eating lunch!

My youngest sister came about 1130am. I ordered Ryan some lunch from the kitchen while Aunt Beth and Abby went down stairs to get some food for us to eat as well. A little table and chairs were brought in so Ryan and his Aunt Abby could sit down and eat together. He didn’t eat much, but he did prove he had a bit of his appetite back. 

In a matter of maybe 4 hours, he drank 2 pediasures and chocolate milk; he was VERY thirsty!

Throughout the day, Ryan, the aunts and I were in and out of the play room, watching TV, hanging out and somewhere in there; I remember leaving them in the playroom to play for a few hours while I went to lie down. I was woke up about 430pm to one of the neurology residents speaking to me. She had a very strong accent and I felt bad that I couldn’t understand her but I thought it was because I was so tired and was just waking up. I ran to the play room to get the Aunts and Ryan.

It’s obvious that Ryan has seizures most when he’s coming down with something and is sick. When he spikes a fever, if not controlled right away, a seizure can occur and make this happen more rapidly. The neuro team spoke to us about the medications Ryan is on and what we can try and do to keep him from seizing.

We’re going to continue to keep him on the two medications he’s on – Keppra and Lamictol. We’re going to increase his Keppra to 4mL twice daily instead of the 3.5mL twice daily. We’re doubling the Lamictol – which will be the max for Ryan. We have a follow up appointment with Dr. M on March 2. We’ll load Ryan with 120mL’s of Keppra and go home!

With that report, Aunt Beth goes home for the day at the same time my parents get to the hospital. I didn’t know how long it would be but by this time, it’s 6pm and time for Ryan to eat. I order him some food and about 45 minutes later we all decided to get some dinner. While we’re waiting for the food, Ryan ‘gets loaded’. He’s clearly exhausted and ready to go home. I’m exhausted and need a shower and my comfy bed.

After dinner, we get the discharge paperwork and leave. Ryan was in the car for MAYBE 5 minutes and he passed out. Once home, when I carried him from the car to his bed, he didn’t budge. Even with having to take his jacket off!! He slept through the night…and so did I!


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