The Seizure Story--Part Two

In case you missed it, Part One can be found here. 

We arrived at Rady Children's Hospital in San Diego at around 8:00pm, I'd say.  

When I walked in, he looked like the photos below, except he had his little hospital gown on (the nurse and I took it off because he had a bit of a fever and also because his wires were getting a little tangled up).

I took these photos at about 10:45pm...

I don't know how it's possible to feel so relieved and yet so grief stricken at the same time, but that's how I felt when I arrived. Being in the same room with him made me feel like I could breathe again. And yet seeing him in a hospital bed, still fast asleep after all that time, wires and IVs connected to his curled up little body--I felt like someone had wrapped me in a big weighted jacket. There was a heaviness, a sadness that had come over me. It's a feeling that I'm still trying to get rid of, if I'm being honest. 

I was only there for a minute or two before a doctor came in and started asking me questions about the seizure. He then let me know that the neurologist would be coming by the in the morning. Until then, we would basically sit and wait for Curtis to wake up. He had a lot of meds in his system that were used to stop the seizure, he said, and it would likely be a few more hours before he woke up. 

I can't say I remember what I thought about during those hours that passed before he opened his eyes. I talked to him, kept saying his name, whispered "I love you" in his ear so many times. One of my biggest fears when he took off in that helicopter was that he was going to wake up and be scared and alone and wondering why I wasn't there with him. Although I had no control over it, I still have guilt about not being able to make that journey to Children's with him and about him being alone in the hospital for 2 hours. But I was so happy to at least be there when he woke up.

"Curtis! Hi Buddy!! I'm here, it's OK!" I said to him. 

"Hi," he said. 

And I felt like dancing. 

But, of course, I couldn't because the nurse and doctor came in. They looked him over and asked him questions. This kid, as always, amazed me. I was so relieved to know that my boy's mind was still there. That he knew his name and how old he was and that he had a brother and sister. His body? That wasn't working so well. He was very wobbly, and was unable to sit up on his own at all. This worried me, but the doc said it was still from the meds. All in all they were happy with how he looked. But he still had a fever. When Curtis was brought to Eisenhower in Rancho Mirage, he had a temp of 99.1. Nothing too out of sorts, but his temp climbed rapidly and at one point it was about 104 degrees. That was probably at around 3:00pm or so. It was almost midnight by now and he was still battling a bit of a fever, despite the Tylenol they had been giving him. This was a concern. A chest x-ray taken at Eisenhower didn't show infection. His ears were fine, his lungs sounded clear, heart sounded good, and everything else on physical exam checked out OK. All they really wanted him to do was sleep.  

That sounded like a good plan to us! Sleep! Yes! 

No. 

He had just slept nearly 10 hours. And after the doctor and nurse were done with him, he was PISSED. He was so confused about how he got to the hospital. He stayed up nearly all night.

And this is what we heard...all night...

"WHY AM I HEEEEEEERE?"

"I WANT TO GO BACK TO PALM SPRINGS!!!!!"

"GET THIS THING OFF MY ARM!!!"

"HOW DID I GET HERE?"

Part of the time he screamed. The other part he cried. There were blissful moments when he sat quietly and played iPad--but the IV was stuck in his right hand (his good hand) and that made him frustrated and sad (me, too). 

Curtis and bear, just hanging out, 11:45pm Sunday night

I went back and forth between wanting to rip my hair out and wanting to cry. It was exhausting. 

  At some point during that hellish night, we did manage a few winks of sleep. I spent the whole time in that little hospital bed with my boy, warmed by the feverish heat of his body.

Monday morning, they came to the room to give Curtis an EEG. It did not go well because he was so out of control. They could barely get enough of a read to make it worth it. I think they got 7 minutes, when they usually like to get at least 10. I don't even know how they got that. They needed him to stay still and quiet and I don't think he was either for longer than 30 seconds. 

So. Pissed. Off.

Wires, Wires, Everywhere...

They decided not to do the MRI because they did not want to sedate him. He would have needed general anesthesia for the MRI and considering the amount of sedation they needed to give him to stop the seizure the previous day, they decided it was not a good idea to put him through it again. He will be going in for another MRI within the next few months. If you recall, he had his first (and only) MRI when he was a baby. (For what it's worth, they don't expect to find anything new and exciting on the MRI. It's just something they'd like to do, just to double-check and be on the safe side.)

When the neurologist came around, Curtis was still grumpy. He managed to answer her questions without getting too angry, but he was not a stellar patient. She laughed her way through the exam. Thank god she was so sweet, because he was a royal turd that morning. During the physical exam, he was still super wobbly--unable to sit up on his own and definitely not able to stand up. 

After the exam she pretty much told us what I had been expecting. The seizure wasn't from trauma, they couldn't find infection, nothing else was funky. She said she thought it was caused by his congenital brain malformation (cortical dysplasia). Up until she had come in and said this, some of the other doctors/nurses had mentioned febrile seizure, but I was skeptical knowing his medical history. She told me they were going to continue him on the IV medication, (Keppra--an anti-convulsant). Curtis' seizure, as I said before, was a doozy. According to their timeline, it lasted about an hour. That is a long flippin' time for a seizure. In medical terminology, it's called status epilepticus. So they wanted to keep him and watch him another night to make sure he didn't have another big doozy of a seizure, and they wanted him on those IV meds. That sounded good to me. He couldn't walk or sit up anyway, what were we going to do with him? 

She then asked how he was doing otherwise (we hadn't seen this doctor since 2011). She wanted to know if he was still in therapy and was happy to hear that he was. She said she thought he looked great. And, at some point, she mentioned that the seizures were something we had discussed in the past and we all knew were potentially going to happen. To this I agreed, because I did know they were a possibility. But, shit, every day that went by was a day that I thought we were closer to never having to worry about this being his life. It's not the same for her as it is for us, for him. She can say, "I told you this would happen" and walk away. Meanwhile we are left with a little boy that now has a whole new set of  "issues". And it's scary. Really terrifying, actually. And it's kind of a HUGE EFFING DEAL to me.  

But that's that, really. The neurologist just kind of leaves you with nothing, other than to call to schedule your next appointment and to call if there are any MAJOR problems that arise. Ugh. Bomb gets dropped and she goes about her day. That's life.

So Curtis and I just spent the rest of the day hanging out. Playing iPad in the hospital bed. Trying to nap between crying and screaming fits. The neurologist DID totally hook us up and prescribe some Benadryl for them to pump into his IV to make him sleep. She saw how wrecked we were from the night before and how much of a nightmare he was being. Still, that little Benadryl nap only lasted maybe 3 hours. We all needed more like 10. 

The good news is that later that afternoon, his fever broke and it never came back. Who knows what caused it. I heard so many theories from doctors and nurses-- a) virus, which caused fever, which caused seizure, or b) seizures can cause high fevers, so it's the seizure's fault, or c) he aspirated some of his own vomit during the seizure and that caused a little infection, which caused the fever, or d) WHO KNOWS?

Fever was gone.

Monday night--my little man and I slept in that hospital bed all night. There I was, in the same clothes I'd been wearing for 24+ hours, no shower, no makeup, and no desire to do anything except be on that bed in the tiny sliver of space next to my child. We both slept so well that night.

Tuesday Morning--Curtis was bored. 

Do you spot the trend? Sit in bed and play iPad...yawn...

Another group of neurologists came by later in the morning. Residents and the main doctor. The doctor gave Curtis his exam and Curtis was actually pretty cooperative--shocking! This doctor basically said what the other neurologist did. They believe the seizure was due to the cortical dysplasia. He, too, gave the line of, "We've been expecting this." Yep, we were. What the hell? 

But he ended it like this. He pointed Curtis out to all the residents and said, "Take a look at this child. He can walk, talk--he has a great vocabulary, he goes to school, he can do pretty much everything a typical child can...so when you look at an MRI and see something like this [meaning his brain/his MRI]...don't go in and immediately give parents bad news. You never know what the child will be like. He is a good example of that!" Even though our news about the seizure was shitty, this made me smile. I'm always proud of my boy and love that he's a shining star. 

The neurologist said we were good to be discharged, even though Curtis wasn't stable on his feet just yet. 

Hallelujah! I was ready to bust out of this place!

Curtis, however, wanted to take a little snooze first...

As it turns out, we waited another 3-4 hours for discharge papers, prescriptions, etc. to be ready before we could get out. 

When we left, it felt good...and it felt scary. 

While I was in the hospital, I received an email letting me know that Curtis' chart had been updated. This usually happens when I make an appointment. I ignored the email at first, but then opened it and logged in to his account when he was napping that last day before discharge. 

This is what I saw:

He went from two "issues" to five overnight. 

Curtis is now on Keppra twice a day. This is the same medication he was on in the hospital. It makes him grumpy/irritable and it makes him sleepy, but it helps stop seizures so you take the good with the bad. He's taking a vitamin B6 supplement to try to help combat the mood disturbances. Fingers crossed for that, my friends. It's not easy living with a 5 year old that acts like a teenager. I love him so much, but his attitude problem is giving me an attitude problem. Curtis has emergency meds (Diastat) that we would need to use if he has another seizure that lasts longer than 5 minutes. A seizure like that would be considered a medical emergency. Hoping this never happens!

People always ask me if he has he had more seizures... 

Nothing has happened like the big Mother's Day bonanza. The neurologists did warn me that there was a good chance I'd be seeing more seizures. I do think I've seen him have a few absence seizures. It's something I'll have to bring up with his neurologist at his next appointment. Not sure that it will change anything or if this is what they were expecting.  

As much as I wish this would all go away, I am aware of the cold, hard facts:

"cortical dysplasia is the most common cause of medically refractory epilepsy in the pediatric population" (found here). What does that mean? It means that brains like Curtis' usually have seizures that can't be controlled by medication. That's a bridge we will cross when/if we get there, but it's not a fact that sits well in my gut.  

Good news? We have plenty of that, too!

I just got approval from the doctor for Curtis to go back to "motor lab" at his school--so he will get to do that every Monday and Wednesday morning for the next few weeks until summer break. Yay! He's thrilled! And we are moving forward with kindergarten plans, with some adjustments being made here and there in light of what happened. 

We also started swim lessons again this week. That felt good. He's so happy to be back in the water. 

Do you notice something different with his smile? Big boy lost his first tooth last week!

We appreciate all the kind words and well wishes from everyone!

xoxo