Saturday, November 20, 2010

In Which Connor Spends A Bunch Of Time In The PICU, And I Am Nearly Driven Insane By A Dancing Pig

Well that was not particularly fun.

Wednesday Jeremy left for a three day trip to West Point for work.  You will recall from the Yeti Incident that Connor has an impeccable sense of dramatic timing.

So Thursday morning I was pulling out of the driveway to take Connor to school when he started having a seizure.  I pulled back into the driveway, mashed on the brake, hopped out and gave him a couple breaths before he came back.  Then I wheeled him back into the house, put him to bed, and called the school to let them know that we wouldn't be making it in that day.

Connor woke up around 9:30 or so and stayed awake for about an hour before having another seizure.  This one was one of the twitchy-but-still-breathing variety.  He then promptly went back to sleep and napped until it was time to get up and go to his developmental pediatrician's appointment at the military hospital. 

Guess what he did while I was driving on the highway?

So after I resuscitated him for the second time that day, I called the doctor's office to let them know we'd be a little late as I hadn't factored my kid stopping breathing into our timetable.  We arrived and had our appointment, where I let the doctor know that Connor seemed to be kind of "off" and that he'd already had three seizures that day.  If he had a fourth I was probably going to end up taking him into the hospital since something was obviously going on.  I had planned, however, to take him into the hospital that's less than a mile from our house and to get a bag ready before I went there.

Connor had other ideas of course.  He had a seizure in the lobby as we were leaving the hospital, right in front of the information kiosk where all of the elderly volunteers were totally flummoxed as to what to do with us.  "Call 911!" someone shouted. 

I'm relatively sure that calling 911 from the lobby of a hospital is not proper procedure in situations like this.  Don't they normally have a big button somewhere they can push or something?  Or a PA code?  Not that we needed it, as by this point I am extremely well versed in doing rescue breathing, but one would think there would be some sort of better system in place.

Anyway, so the seizure was only about a minute and a half long and I only had to give Connor about three breaths, which was more than enough to get everyone in the immediate area in a tizzy.  The guys in the information kiosk pointed us in the general direction of the ER and insisted we go check in there.  So I hauled my limp kid over one shoulder and dragged his wheelchair over to the other side of the building, where we checked in with the nurse and then were directed to sit down and wait with all the not-so-urgent cases.

In the meantime at my request one of the volunteers in the lobby had informed our developmental pediatrician of what had happened.  We'd been sitting down in the ER waiting room about ten minutes when we saw him walking towards us.  "What are you doing out here?" he asked.  When I explained that we'd checked in and were now waiting to be seen he looked mad enough to chew nails and spit rivets.  "Let me go back and fix this," he said. 

We were in a room five minutes later.  Five minutes after that the entire pediatrics team from the PICU was downstairs getting Connor's information, a room was being readied upstairs for him and the attending pediatrician, who happened to be the little guy's primary care manager, had popped in.  We were headed upstairs soon after and settled into a room while they called the little guy's neurologist up in Seattle to figure out a game plan.

The rest of the stay was much smoother.  The nurses and doctors were all fantastic and we received excellent care.  So that was all right.

Connor ended up in a private room which was very nice, though putting him in the PICU was probably overkill.  I figured we'd probably end up in observation overnight while they decided what to adjust on the little guy's medication and then we'd go home.  I didn't have any entertainment for Connor (or me) at all as I hadn't planned to be at the hospital longer than the little guy's appointment required, but there was a large television in the room.  Television is a treat for Connor as we go weeks without turning it on at home, and when he's in the hospital we let him watch as much as he likes.  We figure the longer we can keep the hospital a positive experience, the better. 

The TV had about six channels on it.  Showing at the time was Jerry Springer, news, MAD television, more news, the weather, and what I initially thought was some sort of Barbie movie.  I resigned myself to the Barbie movie.

It wasn't a Barbie movie.  It was my own personal version of hell.

To be specific, it was a five minute loop of Barbie music videos and "bloopers" from various movies that the busty blond has apparently starred in.  Connor loved it, of course.  During the next three hours until Connor finally fell asleep I listened to "Get Your Sparkle On" thirty-six times.  It contains such lyrical gems as "when you're in doubt, glitter it out" and "let's rock the runway, this time we'll take the fun way."  You can watch it in all of its terrible glory here, if you dare.

After about listen twenty I actually found myself mouthing the words.  It was horrible.

We also got to watch an amazing modified version of "Unbelievable" sung by a bunch of cats.  Lyric highlights include "You burden us with your problems, you talk behind our backs, but now it's really clear to everyone that pink's the new black."  The video involved, among other things, a breakdancing pig.

Connor really liked that pig.  Also the dancing horse.

Anyway, they gave Connor a loading dose of IV Keppra and some Ativan, and we had a quiet night.  We were just talking about discharge the next morning when Connor (impeccable dramatic timing, remember?) had two more seizures about ten minutes apart.  Neither of them were very bad-- one was maybe a minute long and the other was only about 10 seconds, and neither involved him stopping breathing-- but they were enough to ensure that we'd be listening to "Get Your Sparkle On" another 800 times as apparently the Keppra wasn't going to do it. 

Luckily there were some other children's programs available at that point, or I might not have survived the day.

Jeremy got back from West Point shortly after midnight, and I left him at the hospital with Connor and drove home, where I brushed my teeth and showered for the first time in two days.  I also fed the cats and gerbils, both of whom were dangerously close to resorting to cannabilism.  When I came back up to the hospital this morning the doctors were just thinking about releasing Connor again.  This time the little guy cooperated and we managed to make it out the door.

So the doctors are thinking it's probably a medication issue that's triggering the seizures, as the little guy doesn't seem to be sick at all.  However Connor is maxed out on his Keppra and Trileptal, and we just upped the Lamictal last week and it's too soon to up it again without running the risk of triggering that whole skin-falling-off thing that's a potential side effect of the drug.  So until we can up his medication again (hopefully in about a week) Connor will be on a twice-a-day Ativan regime.  It's not something that he can stay on long-term, but hopefully it will get us through the week without incident.

Or if nothing else, at least until the Barbie music video marathon at the hospital is over.



Steve Finnell said...

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Julianne Cantwell said...

I just clicked on the skin-falling-off link and almost got sick. Try to avoid that.

I am so sorry to hear about your stay in the hospital and sorry to about the Barbie loop. Ugh!!

Anonymous said...

When you didn't update yesterday, I was worried that something like this had happened. I'm glad that Connor is on the road to recovery now.

Sorry about the Barbie. Sending get well wishes to Connor!


Niksmom said...

Oh.dear.heavens. I am so sorry that Connor seems to be having intractable seizures. I'm equally sorry you had to endure the Barbie loop from hell. Sending prayers & good thoughts your way.

KLB said...

So glad to hear you both are ok. Time to leave a travel kit in the car (toothbrush, jammies, clean undiesf or both of you, perhaps with a charged iPod and a book for you!). Hugs to you three! Karen

Elizabeth said...

I think I love you. You are so able to tell the hideous drama that you are subjected to, the drama of seizures in general -- but then to juxtapose it with that hilarious passage of the Barbie movie. Well, I hate to admit but I literally laughed. And I guess you know that sometimes, you gotta just laugh at the absurdity of the whole thing.

I am keeping my fingers crossed and lifting prayers your way.

krlr said...

I'm just going to put a big ditto after Elizabeth's comment. Glad the little stinker's feeling better & aighhhh on the meds. I guess it's ok to laugh about barbie after he's been released? And in the be-happy-for-what-you-had vein, my daughter's PICU did NOT have a TV and she was heavily sedated during her stay (only one, thankfully & for totally different reasons). On day 3 or 4, when the adrenaline wears off, she was stable but still out, you start WISHING for dancing pigs.

leah said...

Oh, Connor- let's try to stay out of the PICU! Especially when the hopsital has "Get Your Glitter On" as the main TV watching event. Oh, the horror.

For a helpful hint, if you can teach Connor to scream very loudly, you might get a TV with a VCR unit rolled into the PICU. Worked for Nolan on the last stay!

Next visit he'll be sedated/on a vent (and it is a planned trip- airway surgery), so I'm bringing the portable DVD player and some movies for Mommy.

Seriously, sending all my prayers and positive thoughts in your direction!

Julia said...

First and foremost, I'm soooo sorry about the mounting seizures and the PICU stay. I thought I'd made myself clear on this subject when I last addressed Connor directly, but perhaps he's just being stubborn. I truly hope you get the right med cocktail soon.

Secondly, I took you up on your dare and followed the links. I made it to 1:33 on the "Get Your Glitter On" song, right up to the dramatic lyric "Which pink? Decisions, decisions!!!", before I was compelled to turn away to prevent my lunch from making a reappearance. I actually tolerated the dancing cats much better, primarily because of the complete lack of thrusting bosoms in the guise of preschool entertainment. The pig was pretty awesome -- I'll side with Connor on that.

xraevision said...

Nothing like going to the hospital unprepared and having to make up your own "fun" during your stay.

I can just imagine the scenario involving the fussing of elderly lady volunteers. Sounds very familiar.

Apparently, dialing 911 from WITHIN the hospital is more common than a reasonable person would guess. I've heard stories that are likely not just urban legends.

Wishing you and Connor all the best.

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