Tuesday, April 10, 2012

our eventful night

Monday April 2nd started out an odd day. I went over to
Washington High School to register Paige for  high school. And while I was happy that she got into Wash -- I was still registering Paige for high school...
I still hadn't fully processed the whole thing and we all had an uneventful evening -- all the little ones were in bed and Paige was just going too after finishing up her homework.
It was around 10:20pm

Paige appears in our room with a look of horror on her face -- and quietly says to us, "You guys have to come right now. I don't think DJ is breathing"
Both Mike and I fly down the stairs into his room.
DJ won't open his eyes or respond, but he is breathing.

We have no idea what is going on.

Mike tells his dad to call 911.
Somehow Paige tells us she heard him coughing, and then making a loud gurgling sound so she got out of bed to check on him.
By the time Vic walks downstairs to open the door for the paramedics, they are here.
DJ is still not responding.
Paige is upstairs with Mikey and I think Vic went up there too.
Around this time DJ is coming out of it enough to be terrified of all the commotion and recognize Mike.

He keeps crying/yelling "Dad. Dad. Dad"
and fighting off the paramedics who are trying to start an IV.
Mike had to hold him down.
I think there were about 8 paramedics and firefighters in the room.

At this time they tell us it was probably a seizure.
Which is a relief to Mike since he thought DJ had a stroke.

They get DJ strapped into a sitting gurney and carry him downstairs and outside where he was transferred to another gurney, screaming for Mike the entire time.

I will tell you, nobody is better in a situation than my husband. He always knows how to handle things and he makes everyone feel secure in that knowledge. He knows how to fix anything that breaks -- or who to call if he can't (and he knows when he can't) He knows how to treat people. He's the guy that all the women at the market ask to reach things for them off the top shelf. He is that confident in everything he does.
But at this moment in time, with DJ calling for him, he can barely hold it together.

I'm sitting in the ambulance with DJ and one other guy who is asking me questions. DJ is still scared, but he is there.
He keeps asking, "Mama, may I please not ride in the ambulance? Mama, may I please just stay home?"
When the paramedic guy asks DJ if he has blurry vision and DJ response is,
"Well, it depends. I don't have my glasses RIGHT now. And I need my glasses or things are blurry. And I think I left my glasses on my nightstand. But usually, WITH my glasses I do not have blurry vision"
I figured he was okay.

In the ER.
Hooked up to everything. DJ is fine. Explained to him what was going on. He is just thrilled to be watching iCarly...
I'm texting Paige. She is quite upset. She's in our bed with Mikey who won't go to sleep. Kelly never woke up for any of it --
Paige is beating herself up wishing she had gotten out of bed to check on DJ sooner. We call her and both Mike and I reassure her that she did exactly the right things. She wants to talk to her brother to make sure he is okay.
DJ has a CT scan.
We are asked to explain about his ear implant, but everything looks great.

I did know a little bit about seizures, having read about febrile seizures when the kids were babies. I knew that the seizures might be scary, but usually weren't harmful. That people got hurt by hitting their head or something during them -- not from the actual seizures.
The ER doctor explained that DJ might never have another one in his lifetime and that the type he had (what used to called grand mal) didn't happen frequently, so go home, and check in with his pediatrician tomorrow.
We were home by 1:30am

Mike brought the air mattress up and we set it up in our room.
We are all exhausted, but DJ was still thrilled to be up so late -- we all stayed up for awhile. Talking, getting Paige to bed and just trying to get things situated for the morning.
Mike and I both fell asleep right before 4am and DJ was on his way, but the tv was still on.

Close to 4:30 I hear this awful gurgling, choking sound and yelled for Mike just as he heard it too. We both rush over, Mike gets DJ on his side. His eyes are closed and he is completely tensed up. I keep my hand on him, talking to him, as Mike calls the ER.
The doctor tells Mike to wait about 15 minutes and slowly try to wake DJ. If we can't wake him, bring him back to the ER. If he seems okay, call his doctor in the morning -- he will most likely have to be admitted to the hospital for tests.
Twenty minutes later, DJ is in our bed with me (and Mikey) and happy to chat about Dances with Wolves, which we are now watching.
About an hour later, I fall asleep. Mike stays up with DJ.
Mike wakes the girls up for school, they get ready -- he calls DJ's school and wakes me up so I can call Dr. Lee's office while he takes Paige and Kelly to school.
DJ is still awake, so I turn off the tv and tell him to try and sleep. He is out instantly.
I call the office right at 8:30, it's still the service. I call again, the same.
I am sitting up in bed, facing the pillows -- DJ and Mikey are both asleep.
I see DJ's mouth twitch in an odd way.
I move closer to him, between the boys.
DJ's entire body tensed up. His face was pulled and his eyes were wide open and blood shot. He had one arm pulled in tight to his body and the other extended.
His lips started turning blue.
I started to feel panicked -- I looked at the clock, it was almost two full minutes.
All of a sudden his body released the lock on itself.

I knew it would be at least 15 minutes before he would come to. I called the doctors office. They said to take DJ to UCSF emergency room.
As soon as Mike returned from dropping off the girls, I got dressed, got Mikey dressed -- and DJ was still out.
I took him much longer to come back this time. He was very wobbly and was sick in the car right as we pulled up to the hospital. His speech was still slurred when the doctor came in to check on him.

Meanwhile, Mikey decides he is going to be
The Happiest Toddler Ever
and is making me insane. He is playing peek-a-boo with nurses and running in circles and high-fiving everyone.
I do not have the patience for one more person telling me how cute he is...
Thankfully, a friend came and picked him up. (Thank you Misty!) She also picked up Miss K and brought them to her own kid's dentist appointment -- and back to her house. Mike O signed Paige out of school and dropped her off.
Our 7 hours in the ER would have been so much harder if we didn't have such great friends.

So, DJ slept (while we watched every twitch) for about 45 min and then was woken up by the pediatric neurologist who needed to examine him.

Then he was hooked up to an EEG

and he wouldn't go back to sleep.
He did make me take a picture of his brain though --

The neurology team that came in following the EEG explained that they were going to treat the 3 seizures like they were 1 big one. That the type they think he had usually show up on both sides of the brain not just the right side like DJ's does. And the type they think he had usually starts at a much younger age.
They want to do an MRI, and see someone in the neurology clinic since they really still have no idea what is going on with him.
We go home.

I call for the MRI, it's not in their records... the person who can help me is out of town... The neurology clinic people call on Thursday and the earliest they can see him is May 1st.
But The doctor might want to see him earlier after she looks at his chart. They will call me.
They call me Friday late afternoon. They want to see him first thing Monday morning. Please call their office if he has another seizure.

what? That doesn't freak me out or anything.

Monday morning. More tests. The doctor THINKS he has benign rolandic epilepsy, BUT it isn't showing up correctly on the EEG. She called it a "developmental" epilepsy. But he has no family history, isn't the age that these things start (6-8yr) and the abnormalities on his brain are different than in benign rolandic epilepsy.
Since his CT scan was good, they'll wait on the MRI, but they want another EEG. One while he is sleeping.
BUT it could very well be something else going on in his brain,
they don't know.
The seizures might happen once a month, but maybe more often. He should outgrow them within 5 years.
The good news being they will probably only happen in his sleep.
They gave me a medication to stop them if they last for more than 5 minutes.
Now we are just waiting to hear from them to schedule another EEG.

He is back at school today.

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1 comment:

Kristin Sherman Olnes said...

Wow. I can't believe all that happened. I hope everything works out okay for Mikey and for you too. What a crisis, but Mikey handled it so well--and so did you.

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