A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

Saturday, August 17, 2013

Friday Medical Visits part two - Luke's EEG

If someone wanted to study sleep deprivation in our house, I think Paul and I would make much better subjects than Luke, but what do I know?  

I didn't keep him up 2 hours past bedtime last night, as the info suggested, as he was Losing It an hour after bedtime.  But I did get him up at 6, an hour earlier than usual.  Paul had the fun task of keeping him awake all morning while I was at Shriners with Katie, and I had the fun task of keeping him awake in the car on the way to the hospital.  

He's saying, "I'm awake.  I'm not happy about it, but I'm awake."  

Is this shirt not hilarious??  My Mom Is Blogging This.  Too perfect!  I found it on zulily.com and could not resist.  I figured, 'truth in advertising,' he might as well wear it today, since I was going to be blogging about it!  

We got all checked in at the hospital, and I spent a few minutes on the iPad, and then the tech took us back to a room.  Once we got in there, we wrapped Luke up like a little burrito to keep his arms pinned during the placement of the leads.  

He looks cute and helpless here.  And then the fun began.  

I had wondered why the tech told me to lay down on the bed next to Luke.  I was thinking I could hold his hands down from standing beside the bed just fine.  I soon found out why.  Almost 30# of thrashing toddler is a lot to restrain.  I ended up laying on top of Luke, with my hands holding his head still for so the tech could do his work.  Luke's knees were under my ribs.  Ask me how I know.  

This was after the tech drew spots on him with a red marker.  See the pink splotch on the previously pristine sheet?  That's pink tears from him dripping through the markings.  The red marks are all over his head.  

The tech said to me, "Do you want some ear plugs?"  At first I thought he was kidding, but when I realized he was serious, I said, "No, I'm okay, keep going."  He then said, "I'm going to go get some."  Nice.  At least it gave me a minute to snap the above picture.  And to be fair, Luke hits this one note? frequency? something that actually does hurt the ears.  I'm just used to it, unfortunately.  

Then came the gritty gel cleaning substance.  The tech scrubbed each of those marks with a q-tip.  

Next, he stuck the electrodes on.  All thirty something of them.  I think it was 36, but it may have only been 32, and I don't want to over-dramatize.  But it felt like a *&^% lot.  Especially for a head smaller than a cantaloupe.  

So how do they stick them on?  Okay.  Picture a flattish metal cone with a hole in the middle at the end of the wire.  The tech takes that, scoops up some paste, and squishes it onto Luke's head.  Some of the paste oozes out the hole, and the tech puts a little piece of gauze over that.  Imagine the amount of time it would take to do that.  Then multiply by 30-something.  Add a screaming, thrashing, ticked off toddler.  And try to hold said toddler's head perfectly still.  While being kneed and kicked.  It can't possibly go fast enough.  

Once the tech was finished placing all the leads, we wrapped Luke's head in gauze, and he taped it in place.  Then he went and turned the machine on, and adjusted a few wires.  I took my bruised self off the wailing boy and offered him his bottle.  He calmed down and gratefully began to gulp it down.  

The tech turned off the lights.  Luke's breathing regulated to the occasional catch.  His eyes closed and he settled in to the happy business of drinking his milk.  The tech fiddled with the machine some more.  I opened my ipad and began to read.  

Life was good.  

And then.  

The tech turned the lights on.  Luke kept drinking with his eyes closed.  

The tech started messing with Luke's head.  


Luke's eyes popped open, and he gave a grunt of annoyance.  The bottle ran out, and the tech turned out the light again.  Look, dude, that bottle was the only trick I had up my sleeve.  You blew it.  

Luke squirmed and shifted, which had the tech on the edge of his chair.  I want to know what 2 year old goes to sleep perfectly still??  I was thinking how great it was that he wasn't trying to rip all that crap off his head and face.  Luke rolled onto his side, and his head lifted off the mattress (which is great--we don't usually see that).  The tech said, "You have to stay down!"  Like 1) he understands you, and 2) he is even remotely capable of getting up.  If he could get out of the bed, we wouldn't be here, you know?  

Eventually, Luke's hands wandered up to the gauze on his head, and I had to pull them down.  Over and over and over.  So much for trying to read and not interact with him.  Yes, when Luke put his hand on his own face to play peek a boo with me (which is another Big Deal for him!) the tech told me "not to engage."  

The tech popped up again and unwrapped the rest of the burrito wrappings stating that he was sweaty.  I'm thinking it might have had something to do with all that screaming, and the less you mess with him the better, but I don't have the nifty hospital lanyard, so I keep quiet.  

If the bed had been flat, we might have had better luck.  But he'd cranked the bed UP at the head to get Luke to a comfortable working height.  And left it up.  So every wiggle brought the little guy closer and closer to where I was sitting, until he was patting my pocket with the back of his hand, which crinkled with the packets of Pepto tablets I happened to be carrying.  I took the Pepto out of my pocket and tossed it in Luke's backpack so he couldn't crinkle any more, but I could tell the jig was up.  This boy was getting his second wind.  

Seems the tech realized the same thing after a while.  He brought over a light and placed it over Luke's face, asking if flashing lights bothered me.  I said no, and he went back to his machine and turned it on.  Wink.  Pause.  Wink, wink.  Pause.  Flashflashflashflashflashflashflashflashflash.  Okay, maybe NOW flashing lights in a dark room bother me.  I had to look away and focus on the ipad.  My attention returned to Luke when the tech said, "Don't touch it!" and I looked over to see Luke REACHING for the light.  Thing 3 to celebrate here.  Luke doesn't reach much.  He doesn't put his arms up to be picked up, although we often get one half-hearted arm up now.  He doesn't usually reach for a toy if you hold it in front of him.  The ONLY thing he reaches for consistently is his beloved bottle.  So reaching for the light was actually a GOOD thing in my book, but the tech was operating out of a different book, it would seem.  

After trying to induce a seizure with the flashing light, we were done.  House lights on, let's rip this crap off and call it a day.  Sleeping electroencephalogram, my butt.  Sigh.  

All leads off!  Whew!  Glad that's over!  

Like the little globs of paste all over his head?  I made the mistake of kissing his forehead as I was putting him back into the stroller, and let me tell you, that stuff, or the gritty gel, tastes nasty.  And that was after the tech wiped him down a little with a towel.  

After we got out of there, I stopped at the cafeteria and got a drink.  I really wanted a soda, and they had Pepsi (as opposed to that other icky stuff,) but I knew I needed the cranberry juice and vitamin C, so I got this instead.  Bleh.  

And this shot was taken while we were waiting for Daddy to pick us up again.  Totally chilling, happy as a clam, and still not sleeping.  Little stinker.  He did crash out in the van on the way home, of course.  We see his neurologist again in about 2 weeks, so it will be interesting to see what his interpretation of the results is.

Again, thank you for your prayers.  I made it through what was quite a day, between the two appointments for the two kids.  I feel better, then I feel lousy, then I feel better, but not great, you know?  Maybe Monday will bring some answers from my doctor's office.

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  1. It's crazy how they think our kids, raised in orphanages, experiencing who-knows-what, will respond to their protocols like a typical kid! They should have asked you the easiest and best way you get him to sleep and then let you do that after he was wired, if that would have been possible.

  2. I feel sorry for both of you! On the other hand, Yay for Luke reaching for the light and lifting his head. Perhaps he's just not been peeved enough.

  3. holey cow! You have to wonder what possesses these people, sometimes, with their degrees and all. You know? What would make someone think that would work????? But YAY on the reaching and such!!!!

  4. Yikes. Sorry this was such a frustrating experience for both of you!

  5. Wow, what a day. And it never ceases to amaze me just how CLUELESS many of the medical people can be! Glad you made it through.

  6. He reached for the light?!? That's GREAT!

  7. Oh my goodness. Have I been there. Somehow reading your story made me laugh at the memory of it all. And trust me. It was no laughing matter. Fav line, "Sleeping electroencephalogram, my butt. Sigh." Boy, do I feel your pain.

  8. I've been following a facebook "blog" and it appears that you had the same tech as another family had for their 18-month old's sleeping echo. It didn't go well either.

  9. Ugh. My Luc needed a sleeping hearing test last month. Luckily, we had an amazing nurse, who literally held L down until he fell asleep ... and wouldn't let the doctor get near him until he was out.