Saturday, June 8, 2013


I've had lots of people ask what's going on with James this week, so I'll post it all here, and you can feel free to read as much or as little as you'd like. Here's what happened as far as my memory can retell it. 

On Sunday night, the camera on my beloved iphone stopped working.  I take about a zillion pictures a day, so I knew I'd need to get it fixed immediately.   I couldn't get a genius bar appointment on Monday, so I scheduled one for Tuesday morning- 11:20.  (Or something like that.) Once we were there, the Genius working told me that my phone would have to be replaced, and promptly set to work exchanging my old phone for a new one.  During this time, Sam was strapped into the stroller, and James was alternating between sitting in his stroller seat, and climbing up and down on the bar-height stool next to me.  Sam started to seem a little bit cranky, so I asked James if he'd sit in his seat for a few minutes while I held Sam.  I noticed James felt a tiny bit warm when I sat him down, and made a mental note to check his temperature when we got home just to make sure everything was okay.  He was acting completely normal up to this point, but started to seem a little tired.  It was close to naptime, so I wasn't surprised.

I was playing with Sam in my arms, and looking back at James every few seconds to make sure he wasn't climbing out of the stroller, and everything was completely normal.  A minute passed, maybe two, when I felt the strong need to look at James, and NOW.  So I turned, and saw a strange look on his face-glassy eyes, and completely still for a split second, and then the convulsions happened.  his entire body went rigid, and every muscle in his body was shaking.  Fortunately, I'd seen this before, and immediately knew what was happening.  The next few seconds were a blur.  Sam into his stroller seat.  James straight to the floor, turned on his side so he wouldn't choke on any saliva or vomit.  His lips turned blue.  His eyes were rolled back in his head. (I think.  Now that I try to recall the details, I can't!) The convulsing started to slow down, and his eyes started to close.  He was exhausted.  I tried to keep him awake long enough to tell me his name, it took about 10 minutes.

Other things that happened while James was seizing:
an employee played with Sam
Someone asked me if they should call 911.  I said no.
When the seizure felt like it'd been going on too long, I asked someone to call.
When it slowed and the color came back to his lips, I had them tell the EMS not to come.
The guy from the Genius Bar who was working on my phone kept saying that he'd seen this many times, that his brother had seizures a lot as a kid.  Very reassuring.
Someone brought us a stack of paper towels, a cup of water for James to drink, and a phone (mine was still being replaced) so I could call Chris.
The employees asked if there was anything they could do, and my only request: PLEASE hurry with my phone so that I can get out of here. (Was afraid to go anywhere without a phone at this point.

James took a drink of water just seconds after coming to, then refused any more. I set the cup of water on the floor, and James, still unaware of his limbs, promptly kicked it over.  (So now I'm sitting in a puddle of water, holding my baby tight, and trying to make about a dozen judgement calls at the same time.)  I dried the drool off of his face and hair, and asked him a few questions to see if he was conscious.  The only answer I could get out of him came during this exchange:

"Do you still want to go get a cookie?" (The one I'd promised if he would behave while we got my phone fixed)
"[nodding] yes."

So I whisked my barely conscious little boy to the cookie shop in the mall as fast as my legs would carry me.  I'd had a very strong feeling that I needed to get him to eat something, and figured anything would do, even a cookie.  My sweet barely conscious little boy ate about half of an M&M cookie, and fell asleep.

Meanwhile, Chris had made an appointment at the doctor's office, and we were seen in less than an hour from the time the seizure occurred.  The doctor, being cautious, determined that we'd schedule an EEG for later in the week to find out whether the seizures were febrile seizures or seizures with fever, as this was the third seizure in about 20 months.  We scheduled the EEG for Friday, and went home.  James slept as soon as we got home, and for a few hours.  Seizures are exhausting.

Wednesday came and went without incident, except that James's temperature continued to rise slightly, and no fever-reducer seemed to bring it down.  He started sounding a little hoarse, and developed a little bit of a cough.  Because we'd just seen the doctor, I decided to wait and see if the illness progressed. (And I already have an asthma action plan in place.)  We had a normal day, lots of playing outside, even a trip to the grocery store. 

Overnight between Wednesday and Thursday, James's breathing seemed increasingly labored, so we gave him albuterol around 1 AM.  At 5:15 AM, I was awakened by another seizure.  This time, I missed the convulsions, but came in while he was still unconscious.  His temperature had risen to 102.  We scheduled an appointment with the doctor right away, and over the next several hours, his breathing became increasingly more labored.  We called the doctor's office again, and got our appointment moved from 1:00 to 10:30.

Very quickly, we got ready and headed out to the doctor's office- Chris, James, Sam, and myself.  When we got there, the doctor agreed with us that it was likely a seizure in the middle of the night, and sent us to the hospital to have a 23-hour EEG performed.  He also diagnosed James with croup.  We headed for the hospital right away- Dr. James didn't want us to wait. 

When we got to the hospital to be admitted James had a hard time calming down enough to have all of his vitals taken and be moved up to his room to stay. Meanwhile, Chris left to take Sam so that he could spend a couple of days with family in Cincinnati. The doctor came in a few minutes after Chris and Sam left, and was asking me questions so that they could have a full history of what'd happened before James was admitted.  I was in the middle of describing what his seizures look like when he began his third seizure.  I asked if she needed any more information now that she'd seen exactly what they looked like.  She said no.  James was moved to a resuscitation room in the ER.  (Apparently when a child has a seizure in the hospital, it's an emergency.  I didn't know this beforehand.)  We hung out in the resuscitation room for a while, and while we were there, they placed an IV, and told me that the doctor at the hospital, our doctor, and the neurologist had a conference call and determined that the best course of action would be to have a quick EEG done (20 minutes) and an MRI.

James was awake when the electrodes were placed for the EEG, but by the time the test started, he was fast asleep, holding on tight to my hand.

 After the test was complete, they were ready to take us up to James's room.  They put us in the neuromonitoring unit, so that they could have all of the seizure precautions close by.  He was given a bed that looked a little more like a jail cell.  He woke up long enough to say, "This is like Sam's bed!" and then lie down and immediately fall asleep.  He was out for about 2 hours.  I took that time to update family on what was going on, take a few deep breaths, and coordinate dinner (I hadn't eaten yet, and it was 5pm) with Christopher.

James woke up around the time Chris got back, and boy was he happy to see his dad!  We all ate a little dinner, and James was thrilled that I let him have as much of my Jamba Juice as he wanted.  We spent the evening letting him eat anything he wanted, because he would be NPO (no food or drink) after midnight in anticipation of an early-morning MRI.

Night came, and everyone was pretty anxious to get to bed, except for James!  He'd had a pretty strong dose of steroids for his breathing, and was really struggling to rest.  Fortunately, the nurse had taken pity on him and allowed him to take off all his monitors so he could run around the room.  She said just to keep an eye on him and not let him get too worked up because he was still very croupy.  I was happy about this, because it meant that when he wasn't wanting to sleep, he could come lie down with me for a while.  We made silly faces at the camera for fun:

 When James saw this one he said, "Who's that guy?! He just looks grumpy!"
This is supposed to be our super-happy face.  I mostly just love James's expression.

Shortly after the bottom picture was taken, one of the night nurses came in to get James's vitals.  For the first time since Tuesday, he didn't have a fever!  His temperature was close to 98.  I was thrilled and relieved.  I knew we weren't completely in the clear yet, but if the fevers were causing the seizures, they were likely over.

James was up and about or sleeping fitfully (waking up screaming and/or crying every 10-15 minutes) until about 12:45am, when he finally really fell asleep.  That lasted about an hour.  Then from 1:45-4 or 5, he was restless again.  He slept at least from 5-7, and those two solid hours of sleep felt like a vacation! 

Dr. James (our pediatrician) came in to see us at 7:00.  We were so happy to see him!  He talked with us about what the plan was going forward, and checked for James's EEG results, but they weren't available yet. 

The rest of Friday is mostly a blur.  We met with a neurologist named Dr. Mir, and he was WONDERFUL!  And then we met with some neurologists that I didn't like so much.  I guess beggars can't be choosers.  Here's James with Dr. Mir. 

There was a lot of confusion about when we were going to have the MRI done.  We'd been told before 5pm the day before that we'd be having an MRI in the morning, so I was really frustrated to get the news (at 10am) that MRI was booked solid, and we'd be getting in at 3 or 4:00 if at all.  Don't forget, James hadn't eaten since before midnight the night before.  Yikes! I expressed some of that frustration to the team of neurologists we met with, and someone must have pulled some strings for us.  We went down for the MRI around 2:00.

By the time we got to anesthesiology for James to be sedated for his MRI, he'd regained some of his happiness and spunk.  It helps that he'd taken a little power nap as well.  As he was being sedated in Dad's arms, the last words he said before falling asleep were, "Can I eat dinner?"  Poor boy hadn't eaten in 15 hours! 

Waiting for him to come out of the MRI was challenging, but it didn't take too long.  Chris went to get us something to eat (we'd been taking shifts sneaking out to eat, because we didn't want James to see any food!) and we talked/rested for a little while.  They came to get us, and we went to the recovery room to wait for James to wake up.  While we were waiting, I got a call from the doctor who let me know that he'd had them read the MRI immediately, and that everything was normal!  He apologized for the delays, and for the frustrations that it'd caused, and explained sheepishly that it "pretty much always happens."  Hospitals are the worst!  

 It took about an hour for James to come to, but after a few nods and grunts and grumpy noises, we finally found out why he woke up so angry-the first thing he said was, "Can I go to Jason's?"  (Jason's Deli)  We laughed and assured him that we could.  He refused to drink anything, and was all around pretty angry, especially when we returned to his hospital room instead of delivering him directly to the deli.  We tried our hardest to explain that we'd go as soon as they took the IV out of his arm, and he bought it mostly.  In the meantime, they brought us some food, and we slowly coaxed him to eat something that wasn't from Jason's.  

They discharged us pretty quickly (!) and as we walked down the hall to get in the elevator, James seemed really happy.  We took turns asking him, "Are you ready to go home?"  Each time he'd respond, "I mean Jason's?"  

Of course, we took that sweet boy to get his grilled cheese sandwich at Jason's Deli! The manager gave him a free cookie when he heard the story-and James even admitted that his favorite was chocolate chip.  I didn't even know that!

After we finished eating dinner, we went to pick up Sam.  Uncle Matt had dropped him off at the gas station.

Just kidding!  We met Matt and Janelle to pick up Sam at the halfway point between Fairfield and our place, so that nobody would have a 4 hour drive.  James had a lot of fun playing in the back seat of the van while we waited for them to arrive.

Now everyone is home, and all is well.  We're all a little sleepy and pretty worn out from our crazy week, but we're going to be okay.   Sam has croup now as well, so he'll be done with his steroids on Monday.  James has a followup EEG in two weeks, and hopefully we'll have a more clear answer as to what's going on in that funny boy's little head then.

We are so blessed!