Mateo’s Seizure Story: Part I

The worst day of my life began at 3:30 am on April 2^nd.

As I bumbled around feeding and changing Mateo in what was otherwise a typical nighttime shindig, I noticed his left arm rhythmically jerking, almost as if he was doing the robot.

“This is exactly what the doctor was talking about,” was the thought that crossed my mind.  (As I mentioned before, I had asked our pediatrician if Mateo’s trembling was seizure activity.  At the time he described how a seizure would look in an infant, and we both concluded that the trembling was unrelated.)

I yelled at David (comfortably in bed for the nighttime shindigs, not that I’m bitter), who sat up suddenly to catch the end of the seizure.

“Did you see that?!?!  Did you see that?!?!  Did it look like a seizure?”

It lasted seconds.  Maybe 20 seconds total?

Poor groggy David wasn’t sure what he saw.  But Mateo seemed completely fine afterwards.  It was so short.  So unexpected.  I thought perhaps I was being a parental hypochondriac.  But I also knew that I couldn’t unsee what I saw.

We agreed to watch it and call the pediatrician first thing in the morning, because everything was normal— temperature, eating, demeanor—everything went right back to normal after those few seconds.  It seemed imprudent to pack up 5 kids in the middle of the night and go to the emergency room when Mateo was clearly fine.  (We have been to the ER several times, and they do get a little huffy if there aren’t life-threatening injuries involved.)

I don’t remember if I actually slept after that.  Probably a little.

A few hours later, there was another episode.  This time it was his left hand and eyebrow moving together.  You know how the rhythm of CPR is supposed to be the same time as the song “Stayin’ Alive?”  Well, that’s the same rhythm Mateo’s eyebrow and fist had.  If it wasn’t so utterly terrifying, it would have been funny.

By the time I shouted to David to wake up this time, it was already over.  Even shorter than the previous one.

At this point there was no sleeping.  I was on the lookout for another episode.  Were they seizures?  They matched up with the pediatrician’s description, but Mateo looked fine except for the odd jerking.  Maybe they were just some odd muscle spasms.

We called the pediatrician as soon as the office opened, and they were able to get us in.  We packed up the kids and trekked into town.

From my frantic, sleep-deprived state, the older kids could tell that something was up, and we told them that Mateo suddenly needed a doctor appointment.  We left the older three to entertain themselves in the waiting room and brought Bea and Mateo into the exam room.

The doctor asked if we had recorded any of the episodes.  I felt like such a dolt.  The thought hadn’t even crossed my mind.  I was just concerned about having David see them to verify that I wasn’t crazy.

The doctor looked grim as he asked me to describe what I saw.

The details he wanted were fuzzy.  How long did they last?  I wasn’t sure.  A few seconds and forever at the same time.  What limbs were involved?  I wasn’t positive.  His left arm for sure, but maybe both arms were involved in the first episode.  What time was the second incident?  Sometime between 3:30 and 6:00 am.  Not great data.

It was enough.  He recommended that we head to the hospital and get an EEG overnight to verify that seizure activity was occurring.

We decided that David would drop Mateo and me at the hospital and take the kids to my parents’ house before returning to the hospital as well.  In the mean time the pediatrician recommended that we video record any episodes that might occur between now and EEG time.  I don’t have a smart phone, so in my mind I thought I’d grab a nurse and ask them to record it for me.

By this time it was Monday afternoon.

We are frequent fliers at the hospital.  Cee goes to the pediatric floor every four weeks for her infusion.  We know the rules.  We know the procedures.  We know the nurses.

There was a new nurse in training handling our admission, and she was thorough about going through the checklist.  If it had been any other nurse, I would have mentioned that we already knew all the hospital hoops.  But this nurse was being trained.  As we went through how to work the remote control for the TV, where the playroom was, etc., I couldn’t keep it together anymore.

The newbie nurse stopped her checklist and started patting me.  She was very sweet.  I could almost hear her thinking, “See supervisor nurse lady?  Look at me comforting this distraught mom?  I am so going to rock this job.”

We finally got through the admission checklist, and the EEG technician came in.

That’s really when the worst day ever kicked it up a notch.  With Cee we’ve been through uncertainty.  Testing.  Pain.  Despair.  We’ve met with specialist upon specialist.  This is wasn’t our first hospitalization.

But Cee was four (and a mature four) when she was diagnosed.  We could explain what was happening.  We could joke.  We could make her feel better with some sticker books and TV time.

With Mateo, I was pretty much his only comfort, and we were separated.

The EEG technician needed to make a bunch of precise marks with a permanent marker on Mateo’s head, then connect a bunch of electrodes to those spots, then make sure that they were connected like they were supposed to be.  The electrodes would record brain activity, and a camera would be set up to monitor what Mateo looked like on the outside during the episodes.  It would run all night.

The process took hours, and I couldn’t hold him.

He screamed.

He screamed and screamed and screamed in a way that I wished I could have.

And then he had a seizure.

“Do you see that?!?!”  I asked the technician.  She had had her phone out to call a colleague a second earlier.  “Do you have your phone?  Can you record it?!?!”

She was apologetic.  “I’m sorry, not with HIPPA.”

I could tell she was working as fast as she could, but I could also see that the constant screaming was disrupting her mojo.  And I was upset that he was having a seizure that wouldn’t be monitored.

Someone else came and helped trouble shoot why something wasn’t working like it should.  My poor baby seriously looked like the electrical box in a house with all the wires coming out.

The screaming didn’t stop.  I tried singing to him through the sobbing, but it wasn’t super effective.  We tried a pacifier (not something he’d ever used at home).  No dice.

Eventually the bonnet of gauze and tape to protect the electrodes covering his head was finished, and I was able to hold him.  He calmed down right away and fell into an exhausted sleep.

On the one hand, I never wanted him to have another seizure ever, ever again.  On the other hand, I wanted the EEG to pick up what it needed to.  And I was upset that things weren’t up and running for his last episode.  The thought that he had been through so much without any payoff was disheartening.  What if that was his only one?!?!

 

Next was time for an IV.

I left the room.  At that point David had come back (he missed the EEG setup), and he still had the wherewithal to be able to sing to Mateo.  I went to the kitchenette to get water and sob in a different room.

The nurse (a good nurse, a lovely person) tried three times before calling in the NICU nurses to place his IV.

I came back as the NICU nurses were finishing up.  If I could admire those nurses any more, there would be posters of them on my walls, and I’d dress up like them for Halloween.  They are literal superheroes.

But I was mad.  Why didn’t the superheroes get called after one attempt?  I understand that it’s probably difficult to know when a vein is going to “blow” (isn’t that the worst term ever?!?!), but send in the NICU nurses for everything for the week old baby, please.  (Later they did.  I asked that they do his blood draws and anything else that might require super powers.)

Mateo had another seizure, maybe two, around this time.  I maintained that the stress of his current life situation was triggering seizures.  Who knows if that was true or not, but the kid was beyond distraught.

After his IV was in, I was able to carefully hold him, being careful of his bajillion head cords.

He didn’t seem like himself at all.  I wasn’t sure if that was because of some blossoming illness or the hours of screaming.  As long as I stayed sitting in one certain chair in order to be on camera and connected to his machines, I could hold him.  So I did.  We were both much happier that way.

I didn’t know I was capable of producing that many tears.  It was hard to believe we had been doing normal things like registering for baby things at Target, eating dinner, and going to church just the day before.   Now there was an impressive amount of fluid coming from my face for hours.  Honestly, I thought at some point I would have dried up.  Nope.  All tears, all the time.

I cried for Mateo’s suffering.
I cried at the thought there was any action of mine that caused it.
I cried for the unknown future.
I just wanted it to be okay.  I held Mateo and hoped that we would be okay.

 

 

Thank you for your prayers!  Hopefully I can find a few minutes and type up Part 2 of our story soon.  In the mean time, know that Mateo is home and stable now, and we’re meeting with specialists to come up with our long-term plan.  <3