Wednesday, June 23, 2010

Luke's "Episodes"

You might remember back at Mother's Day Luke had what we thought was a seizure or infantile spasm.  

That was May 9.  We were at the hospital around 8 pm, visiting a friend who had a baby.  Luke was sitting in her bed with her just being his happy old self.  Suddenly, his arms jerked out from his body & he stiffened while arching his back.  His mouth was open in a little gasp and his eyes were glazed over.  It took 4-5 of them (each lasting about 2-3 seconds & coming within minutes of each other) before we realized something was going on.  Over about a 15 minute time-span he had 9-10 of these spasms.

We took him to his pedi & she thought nothing of it.  Said it was probably a one-time thing & if it happened again she'd send us to a neurologist.

Well, we watched & nothing happened so it slipped to the back of our brains.

Then on Father's Day around 6:50 in the evening, Luke was playing on the floor with a new toy & he started doing it again.  He had maybe 5 spasms before we left the house, all in a matter of minutes.  By the time we'd gotten to the hospital around 7:45 he'd had more than a dozen.  They were getting more minor though.  Some were as subtle as squishing his head & shoulder together.

By 10:30 we were told we were being admitted & started getting ready for that.  They scheduled an MRI & a short EEG.  Luke didn't have any more spasms after 8:15 that evening.

We had a rough night.  It took 3 tries to get the IV in his little arms.  The little girl (9monthsold) in the room w/ us cried all night.  Her mom kept YELLING at her to shut up & sleep.    I hadn't had any food since 1:00 in the afternoon.  DH had to go home bc there wasn't room for both of us to sit in Luke's room.

I had to get up @ 3:30 to feed him because he wasn't allowed to nurse after 4 am.  At 6:30 he woke up hungry, but I couldn't feed him.

This was the hardest thing about being in the hospital.  When your baby wants to nurse & you can't it just about broke my heart.  

We had the EEG first thing, around 9 am, Luke was a trooper and slept soundly through it.  Afterwards I was able to nurse him a little but only for a few minutes.  We had to keep him awake, because they wanted him to be tired for the sedative they were going to give him for his MRI @ 2:00.

Around 11 am Luke had another episode w/ about 7 spasms.  One of the nurses (an aid maybe) saw them & got the neurologist to come in.  At first he was like, "That? That's nothing." Because it was just one of the head-to-shoulder twitches, but I know my baby.
I told him, no, that is definitely SOMETHING, he does not normally do that!

After the neuro checked him out he said the EEG was perfect & that he did not believe Luke was having seizures.  He suggested that it was myoclonic jerks, probably benign, and said we'd probably do a longer EEG to make sure.

We toughed it out & he fell asleep around 1:00, with an extremely empty belly.  

Somewhere in there we got a new roommate.  A TINY 9 month old boy, all by himself, no family or anything, with LOTS of problems.  He had a catheter, oxygen, several IV bags, and the nurses were talking about changing his dressings over a surgical site multiple times bc he bled through.  We found out later he was trembling because he was detoxing.  Poor little thing.  How does a 9 month old even GET drugged?  They had formula for him (that someone brought) so I don't think he was breastfed.  Anyway, he broke ALL of our hearts.  Over there struggling to get better ALL BY HIMSELF!  Poor baby.  

(This is where I interject that I absolutely HATE going to Children's bc of all the sick/pathetic children/babies, I am not emotionally stable enough for that!)  

Anyway, back to our MRI.  I cried.  It was the first time I broke down.  They gave him the sedative & he freaked out just like I do.  I hate getting put under.  It freaks me out.  He cried and flailed in my arms for about 6 minutes before he went to sleep.  Then I held him for a few more to make sure.  When the nurse asked me to put him in the great big huge gurney I broke down crying.  She asked if she could take him & that just made it worse!  

Finally, I laid my sweet baby boy on the bed and let them take him into the MRI room.  We weren't allowed to go with him.  We went to the Farm Fresh (yes there is a little store in the hossie) and walked around, used the bathrooms, and made a few phone calls.  I was waiting outside the door when they brought him out of the MRI.

He was still completely out.  We had to force him to wake up.  I was able to nurse him while he was waking up & that was wonderful.  

The neurologist came & said that his MRI was perfect.  So, the neuro changed his mind.  He said we could go home but that if Luke continued to have episodes that we should call him back & he would go ahead and do the longer EEG. 

We went home Monday night.

Tuesday Luke had an episode around 11 am and again around 4 pm.  The one at 11 was a big one, with arms jerking & all, but only like 5 spasms.  The one around 4 pm was smaller, with like 5 spasms but only the head/arm twitch spasms.  

We called the neuro last night & waited for a call back.

He called today.  They scheduled Luke for a 4 hour long video EEG tomorrow morning @ 7:30.  

Luke has had a few random spasms today, none that I could catch on camera or see full-on, so I'm not sure if they were episodes or what.  He has been VERY fussy & only fell asleep for a nap @ 3:00.

So tired on Sunday night, he fell asleep in Mandy's arms, I was waiting to feed him until he had his IV in and could go to sleep for the night.


Melanie said...

Poor Lucas, and Mom & Dad. I'm wondering if these are tics instead of seizures and it could be something like Tourette's? It will be "interesting to finally find out what the dx is. In the meantime, know that we are praying for you all. Love you. xoxoxoxo

Ameya said...

Oh my gosh!! So scary! I'm sure he's fine, but I know I'd be so scary! I hope they find out what it is, babies certainly don't do that for no reason!

I know when i was a baby I had febrile seizures all the time and my mom still tells me how absolutely terrified she was as she kept rushing me to the hospital trying to figure out what was wrong.

Be sure to tell us how it goes tomorrow!

Mary Stebbins Taitt said...

WOW! How scary and upsetting, sending love and prayers your way!

Chicke3 said...

Oh my I will be praying for you and your family....I had my son earlier this week and because he's 35 wks gestation I had to leave him for a day after I was discharged and it was the hardest thing I ever did! please write to me if you need someone to talk to dear.