In Which We Have An EEG

So we got up bright and early on Friday morning and Connor had his EEG.  We were there a bit longer than we expected because our hospital is the type that gives you a pager and has you wait in a reception room until you are paged to go back to the EEG area.  Apparently it really helps this system work if the receptionist actually turns the pager on, which she neglected to do in our case.  So we ended up waiting for about forty minutes before they made an announcement over the hospital loudspeaker, we went back and they discovered why we hadn't responded to the six times they'd paged us.  Whoops.  The EEG tech said she'd be having a "discussion" with the receptionist, and I got the impression from her tone of voice that they would not be having a pleasant chat about the weather.  Oh well.

But anyway, once we finally got back into the EEG room and hooked Connor up, he cooperated and had a seizure about twenty minutes into the exam.  So we were able to stop shortly after that, since the doctor had what he needed.  While I don't like that Connor is having seizures, I'm glad that we were able to capture one during the EEG so we don't have to go back and do a 22 hour study on Tuesday.  Our girl isn't quite ready for me to be away from her for so long yet, and the less time Connor has to spend in the hospital, the better.

So they determined that these are, indeed, seizures and not some sort of new weird thing I'm making up about my kid, which is always nice to hear.  What was not so nice to hear is that Connor's brain is showing epileptic activity between seizures now.  Basically this is a progression of his seizure activity.  Not good. 

So we've started on a new seizure medication, called Rufinamide, and we'll be working up to a therapeutic dose over the next couple of weeks.  Then once we're up to the right dose, if it's effective we'll work on coming down off of one of his other seizure meds.  Four seizure meds is a bit too much for the kiddo to be on without starting to worry about nasty side effects.

Until he's up to a therapeutic dose, we can expect to see more seizures like the ones he's having now.  He had five today, and was pretty worn out by bedtime.  Please keep your fingers crossed that this new med will give him some much needed rest!

~Jess

In Which We're Headed To The Hospital

Connor had six seizures today, and enough is enough.  The neurologist would like Connor to have another EEG before he figures out which medication he'd like to change (or add), so we're going in for one tomorrow morning.  It's going to make for a pretty early morning, and it will be the first time since we arrived home that I haven't seen Ellen off to school.  I'm really wishing that Connor's seizures had waited a few more weeks before blowing up so we could have had more time to settle in.  Or even better-- a few more years.  Or never.

But it wasn't too be, so we'll figure things out.  Keep your fingers crossed that they'll capture an event during this EEG, or the next step is a 22 hour overnight study.  I'm so not ready to be away from my girl overnight yet, and I'm pretty sure she's not ready for that either.  But we'll do what we need to do if it comes to that.

Wish us luck tomorrow!

~Jess

In Which Connor Has A Cold And It's Awesome

Finding out the fantastic news about our adoption wasn't the only fantastic thing that happened yesterday!  Connor had a neurology appointment, and that went really, really well.

His neurologist was thrilled to hear just how well the little guy has been doing in the past few months.  During August and September, he's only had four seizures total and three of those were during an illness.  That's amazing.  The incredible change in the frequency and severity of his seizures that we've seen since Connor started taking Zonegran and we received the anhidrosis diagnosis has been dramatic.  He hasn't had a single seizure where he's completely stopped breathing since 2011, and while we've still had to use oxygen his seizures in general have been less virulent-- we haven't had to use Diastat since June! 

I got the impression that it wasn't at all what our neurologist was expecting; he told us at an earlier appointment that once you've tried more than three or four seizure drugs the odds of finding one that will work are pretty abysmal.  I'm glad that we've found a medication that, while it's not stopping the seizures entirely, is greatly improving Connor's quality of life.

So not only are we going to see the neurologist in six months rather than our usual four, but we're going to start trying to work down off of one of the little guy's seizure medications!  He's been on Keppra since he was first diagnosed with seizures, and we're going to start very slowly working him down off of it.  He was taking  eight milliliters twice a day, and we'll be going down to seven this month, six in October, and so on and so forth until we discontinue the medication entirely in April. 

Obviously if Connor's seizures pick back up we'll bump his medication back up, but we're really hoping things will go well and he'll have one less medicine with potentially nasty side effects that he needs to be on.  Keppra tends to be one of those medications with a sedative effect, so the neurologist said we might expect Connor to become more alert and aware of his environment as the levels in his system go down. 

The little guy tolerated the appointment reasonably well, considering that he has a nasty cold right now and is grumpy and sleepy and sniffly as a result.  It's actually been really exciting for me to see him have a cold-- though that sounds kind of weird-- because that's all we've been seeing.  He started popping a fever initially but we've been managing it well with Tylenol, so we've seen no seizures.  We're not in the hospital.  We haven't seen a whole bunch of mysterious symptoms that turn a cold into something much more complicated.  It's not four different diseases at once.  It's just a cold.  This is the first time I can remember in a long, long time that I can say that.

Hooray for colds!  Or at least, hooray for just colds.  Now if only I can avoid getting it too.  I'm not so excited about this cold that I want him to share!

In Which Connor Straightens Out

Today I went to the dentist, which was every bit as fun as it sounds.  This time I was in the same room where I got the phone call about Jer three years ago, which was a little surreal but not really uncomfortable. 

I'm happy to say that while I have terrible eyes, I have great teeth; I've never had any work done whatsoever on them other than the occasional cleaning, and they seem to hold up just fine.  I am mystified as to how this works, considering I eat a ridiculous amount of chocolate, but hey-- I'm not complaining!  At any rate, other than being told I need to floss more (something I've heard at every single dentist appointment I've ever had) things went swimmingly.

In other news, we brought home Connor's knee extension braces today!  They are Wheaton Pediatric Knee Immobilizers, for those who are interested in the technical side of things.  Connor will be wearing these during his standing time, and working up to wearing them during the night.  They should not only help with his stability, but also help stretch out his hamstrings and to get a better stretch of his hip flexors and thigh muscles. 

He's been using them at his weekly physical therapy for a while now, so hopefully it won't take him too long to get the hang of them at home.  We're hoping that since they aren't too bulky he will be able to wear them for quite a while before he ends up in danger of overheating.  He's really cute when he stands up in them because all he wants to do is stare down at his legs with this really puzzled look on his face.  I figure he's thinking "why aren't my hinges bending?"  

While I was going through the little guy's stretching today, I noticed something really exciting.  Connor's clonus-- the involuntary jerking motion that is a big indicator of neurological damage that happens when you push up on his feet-- is almost entirely gone!  Last year this progressed to the point that you literally could not flex Connor's feet at all without setting off the muscle spasms, so this to my mind points to some major improvement in his overall neurological state.  He goes in to the neurologist on Thursday, so I'll be sure to talk to him about it then and see what he has to say about it.  I'm hopeful though that this is a sign that the serious skill regression across the board we saw with all of last year's seizures might potentially be at least partially reversible. 

It just makes me so happy that he's doing so well!

~Jess

In Which Connor Hogs The Aisle

Well, you all know how Connor is.  Since he had such a fantastic day yesterday, he apparently felt the need to balance the week out.  So he had four seizures today: all of which were the get-really-cyanotic kind. 

He had the second one of the day in the middle of the grocery store's paper towel aisle.  I carry a blanket under Connor's wheelchair for just such occasions, and I spread it out and put him down on his side in the middle of the aisle to wait out the seizure.  He doesn't have any control over his facial muscles while he's having an episode, and if he stayed upright he could easily drown in his own bodily fluids because he can't swallow his saliva and so it would run into his lungs.  Not fun.  Hence the lying-on-his-side-in-the-middle-of-the-aisle thing. 

We had the aisle all to ourselves.  Out of the corner of my eye I watched a variety of people swing their carts to go down and pick up some toilet paper or light bulbs, take in the crazy mom who was apparently letting her kid take a nap in the middle of the aisle, and decide that they really should stop by the meat department first, or maybe grab something over in produce.  I'm sure if I'd been acting upset they would have come running to see if I needed help, but because I was acting like this wasn't out of the ordinary (and sadly, for us it isn't all that unusual) they probably just thought I was nuts. 

At any rate, that cut our grocery trip rather short.  Luckily I've learned to shop for the most essential things we need first so that if Connor does have some sort of crisis I'll at least be able to buy the most important stuff, even if I don't make it to the peanut butter aisle or whatever.  It's a strategy that's served us pretty well over the past few years.

Connor wasn't running a fever, it wasn't a hot day today, and he didn't seem to have any other symptoms, though he did get a glorious case of goosebumps and chills at one point.  So if he keeps this up tomorrow it will be time to call his neurologist and see about adjusting his medication.  I think the last adjustment he had was back in October, so it's been a while.  It might be that he's about due for a change.

We'll just have to see what tomorrow brings!

~Jess

In Which Connor Goes To The Neurologist

Connor and I drove up to Seattle today for his quarterly neurologist appointment.  It was actually a great appointment, and I don't say that often about neurology appointments.  That's because usually we go up and tell the neurologist that Connor's seizures have been getting worse.

But for the first time in a long, long time, we could give him a good report!

Since we found out that Connor has anhidrosis (a.k.a. he doesn't sweat) and have started taking precautions to make sure that he doesn't overheat, we've seen a dramatic downturn in the number and severity of his seizures.  Now other than periods in which he's sick and running a fever-- in which case we've just learned to expect tons of seizures-- he's averaging one about every three weeks, which is better than we've seen in well over a year!  As a consequence, not only is Connor feeling much better, but he's been communicating much more and regaining skills we haven't seen in a long time. 

Also the progression of the neurological damage Connor's seizures inflict on his body, like the tremors, has slowed way, way down.  Of course the damage already done probably won't reverse, so the clonus and hyperactive reflexes he already has are probably here to stay.  But he's still young and the human brain is remarkably resilient, so if we can keep his seizures down to this sort of manageable level and do our best to keep him from getting sick, there's no telling what kind of strides he could make in the next few years!

After Connor's appointment we headed straight over to the lab, where Connor got his blood drawn to check his medication levels and also to see what the protein and creatinine levels-- indicators of his kidney function-- are looking like.   

Luckily the blood draw didn't take long and was pretty much painless for Connor, since we were lucky enough to come in when Hector The Wonder Phlebotomist was working.  I swear that man is magic-- Connor doesn't even flinch when he puts the needle in, and he gets it right dang near the first time every try.  We should find the creatinine and protein level results out some time in the next couple of weeks; keep your fingers crossed that those levels will have gone down, which would be an indicator that his kidney is doing its job and isn't in trouble.

So after that we walked around the shopping center down the street from the hospital, picked up a reward book at the in-resident toy store, grabbed a bite to eat, stopped in the chocolate shop for some goodies and then headed home. 

We'll see the neurologist again in September, unless we have something important come up before then.  I hope that appointment goes as well as this one did!

~Jess

In Which We Throw Off Connor's Groove

Connor had his neurology appointment today in Seattle, so we spent the first half of the day there.  We were interested to hear what Connor's neurologist had to say about his new diagnosis of anhidrosis; apparently one of his seizure medications can cause the condition as a side effect.  However, the medication has also seemed to help Connor quite a bit; while on it we haven't seen a single seizure where he stops breathing completely.  We're also not sure at all that the medication is what's causing the anhidrosis, as Jer and I haven't ever seen Connor sweat and he's only been on the Zonegran a few months.  So it's difficult to know whether or not we should change the little guy's medication regime or not.

Connor's neurologist is going to consult with the head epileptologist and determine what the best game plan is going to be.  It might be that we don't change anything, it might be that we try a different medication or that we revisit the possibility of the ketogenic diet.  There's not a clear path here as to what the best treatment is going to be, so I'm sure they'll weigh the options very carefully.

After we left the neurologist's office we headed down the street to the giant Barnes and Noble where Connor usually gets his Reward Book.  Connor always gets a book after each appointment where he does well (which is all of them, because he's a fantastically well-behaved kid) as part of our Make Sure Our Kid Who Sees Eight Bajillion Specialists Isn't Afraid of The Hospital campaign.  We pulled up in the side parking lot of the bookstore, I got Connor out of the car, wheeled him around to the front of the building and stopped dead at the giant sign sitting out in front of the store.  "Barnes and Noble Has Closed," it read.  "To Purchase Books, Please Visit http://www.barnesandnoble.com."  Apparently the bookstore didn't renew its lease.

Connor was not a happy camper, and it wasn't just because of the words his mommy was muttering under her breath.  My child is a creature of habit.  One of the reasons he does so well at hospital appointments is that we keep the routine the same every single time, and we go over the routine repeatedly before we leave and during the course of the day so that he knows exactly what to expect. 

The routine goes:
1) Drive Into Town
2) Check In And Sit In Waiting Room
3) Go To Appointment And See Doctor
4) Get Labs Pulled
6) Leave Hospital And Drive To Bookstore
5) Buy Reward Book
6) Eat Lunch
7) Pick Up Salted Caramels For Daddy (there's a fantastic chocolate shop in the complex as well)
8) Drive Home

There was absolutely no room in this routine for "Stand In Front Of Closed Bookstore And Stare At Sign For Five Minutes While Trying To Figure Out Where Nearest Alternative Bookstore Is As Connor Gets Progressively More Upset."  We weren't going to be visiting the bookstore's website; somehow I was pretty sure that showing him an online picture of The Reward Book We Can Buy Online wasn't really going to cut it.

And then Connor proceeded to lose his little mind while I tried to get us back on the rest of the routine as quickly as possible.  We ate lunch, or at least I ate lunch as fast as I could and Connor yelled his head off, we stopped in the chocolate store where I bought chocolate and Connor angrily signed "No Don't Like Bad Want Go Bye Bye," and then we got back in the car and drove half an hour down the road to an almost identical Barnes and Noble, where Connor instantly reverted to his usual angelic self. 

So we'll be rewriting our hospital visit routine to put the bookstore visit after lunch rather than before lunch, and hopefully if I rehearse it with him enough times we'll avoid a repeat performance of the giant meltdown he had today.  That is if they'll quit shutting down my bookstores. 

I like getting a Reward Book too.

~Jess

In Which Connor Has Some Tests

Well, that was unexpected.

Connor slept for a grand total of twenty-two and a half hours (with just a few short breaks in which I tried unsuccessfully to wake him up)-- from 7:00 yesterday morning until 5:30 this morning, when I woke him up to get him ready for our brain MRI and sedated hearing test appointment.  Now that's a long nap! 

Not only that, but he actually went to bed on time tonight and is currently peacefully asleep.  Trust me when I say that I am extremely excited about this, and I'm trying to blog as quickly as I can so that I can take advantage of being able to go to sleep before the wee hours of the morning. 

Connor's tests both went smoothly, though to be honest I wasn't sure if they were actually going to do them at all because he's still pretty congested from his cold of earlier in the week.  They listened to his lungs and after a little debate decided that he'd be all right.  So they got an IV (in a scalp vein, which looks kind of bad but is actually a pretty good place for him to have one since he's much less likely to mess with it) and administered a drug called Propofol to make him fall asleep.  He's been given Propofol in the past for procedures where they need to make sure he remains really still and it's a great drug for him because it puts him out easily and comfortably and he recovers quickly and well from it (it also happens to be the drug that killed Michael Jackson, but that's kind of irrelevant).  The only issue he has with it is that he burns through it really quickly due to his crazy metabolism.  The anesthesiologist said he had to give Connor way more than he was expecting to keep him under. 

Also Connor kept coughing during the MRI so it took them more time to get pictures than they expected, since every time he coughed he of course moved.  But otherwise things went really well.

So we don't have the results on the MRI yet, but we heard the results of the hearing test right away, and right now things look stable!  Connor actually tested like his hearing had gotten slightly better, which the audiologist said was probably due to a margin of error.  At any rate, it was great news to hear that he hasn't experienced any more hearing loss at this time, and I'm really hoping that this continues to be the trend in future years! 

Overall the day went pretty well!  And now I'm off to sleep.  Whoo hoo!

~Jess

In Which Connor Is Headed Back To The Hospital

Connor had five seizures today: including one a couple of hours after he'd been given Ativan.  We ended up using the Diastat during the last one, which was a scary five minutes long.  At least only one of those five seizures was apneic today-- yesterday it was three out of the four. 

Since it was obvious by now that Connor's seizures were completely out of control and on weekends the nurse triage line is shut down and I wouldn't be able to expect an answer until Monday, I called the Children's hospital and had them page the neurologist on-call directly.  I only use this as a very last we're-out-of-options resort because technically you're really not supposed to do it unless you're medical personnel calling from another hospital to discuss a patient's care.  But I'd had a couple of the neurologists give me their blessing in the past on this sort of thing, and I figured I'd try my luck and see if one that already knows Connor was on staff tonight.  By now the list of neurologists up there he hasn't had at least some contact with during a hospital stay is getting to be really, really short.

Yes, I have figured out how to convince the operator to actually bend the rules and page the neurologist for me.  I have my ways.  Let's just say that I am normally an extremely nice person (and I start out my conversations with the operator in Nice Mom mode) but I can be completely, totally ruthless when it comes to getting what my son needs if that doesn't work out. 

Thankfully I didn't have to go past the initial friendly request this time-- the operator was really nice and connected me without a fuss.  I've found that it really depends on which operator you get as far as how much pushing you end up having to do.  Some are more sticklers for the rules than others.

Anyway, so I got a call back about ten minutes later, and I was in luck.  Turns out the fantastic neurologist who initially managed Connor's care the last time he was up there was the person on call, and she knew immediately who the little guy was and why I was probably calling.  She's now attempting to get an appointment with the epileptologist tomorrow rather than in mid-April, which is when it is currently scheduled.  She'll speak with the epileptologist personally and make sure they have Connor's background information and history. 

We're hoping that the little guy-- who is now sedated to the gills on Diastat-- will remain seizure free until then.  Diastat usually stays in the body for about two days, so with any luck that will give us a window of time to work with and hash out a game plan.  If we do get in I'm not sure yet whether or not he'll be admitted once he gets there-- they may want to see what a typical seizure for him looks like so they can treat him more effectively-- but I'll let you know whether or not we end up downtown for an extended period of time again.  Please keep us in your thoughts and prayers over the next few days-- we sure could use them.

I really hope we'll get this figured out. 

~Jess

In Which We Make It Home And Have A Game Plan

We're home!

We made it out the door around one in the afternoon today, and after dropping by the bookstore to get Connor his Reward Book we headed for the house, where we promptly climbed into bed and took a three hour nap.  While the sleeper couches at Children's are pretty cushy for a hospital setup, I can't exactly say my sleep over the last two days has been restful, so I really needed that nap.

Connor needed the nap because he had another seizure on the way home.  So that was great.

He had two today and we can expect him to have more over the next couple of days before his new Lamictal dose really kicks in, but thus far they've just been partial seizures that I feel comfortable handling at home and not the apneic seizures.  We're tapering him down off the Ativan slowly; he was on it long enough that it's likely his body got used to having it and stopping it cold would trigger even more seizures.  Hopefully the new Lamictal dose will tide us over until mid-April, which is when we'll be seeing our new specialist.   Yep, we're adding one to the list; Connor will be seeing an epileptologist in Children's special Epilepsy unit.  Up until this point we've been seeing a more general neurologist, but they feel that at this point Connor's seizures can be classified as intractable and so we qualify for the more specialized unit.

An epileptologist is a neurologist who specializes in epileptic seizures.  We'll be examining other ways of controlling the little guy's seizures, potentially including the ketogenic diet and the vagus nerve stimulator implant.  These are some really fantastic doctors who specialize in unusual cases like Connor's, so I'm really hoping we'll be able to find some good answers through the program.

In the meantime we'll be easing Connor back into his daily routine.  The next couple of days it's extremely likely we'll be seeing more seizures, but we're hoping they'll be tapering off after that.  I'm just glad we've got the little guy back home again and we have a game plan to follow.  Hopefully we'll be able to stay home for a while!

~Jess

In Which I Didn't Blog Because I Was Really Tired But There Are No Emergencies Or Anything And Also The Bout Was Awesome

Don't worry!

No one has died, no one is in the hospital, I did not break all my arms and legs at the bout (which I wasn't skating in anyway) and there have been no major disasters.  I just got home at one thirty in the morning last night.  And as much as I love all of you, it's probably for the best that I did not blog because I'm incapable of coming up with coherent sentences that late at night-- let alone spell things correctly.  My blog would have read something like: "Bout was gud.  I tiered tyered sleepy.  The end."  I am not really a late-night sort of person.

Of course Connor had insomnia (Ativan, how I love thee!) and stayed up until three or so in the morning, so I probably could have blogged anyway.  But it wouldn't have been pretty.

The bout was amazing, by the way.  It sold out, which was pretty awesome.  I'm not sure just yet how many people were there, but we were actually having to turn people away at the door-- it was that crowded!  The bout was extremely close, but in the end my team pulled it off by one point.  Talk about a nail biter!  The bout just before ours (it was a doubleheader) also ended up being a neck-and-neck game, so I think the crowd got a really good show.  I need to start making Connor a little vampire outfit so he can cheer for me on the sidelines if he goes to the next one (he stayed home with our respite care worker).  Anyone know how to make one of those Dracula style capes?  I bet he'd love to chew on the collar.

The little guy is still seizing, I'm sad to say.  He's not able to stay off of the Ativan for more than a day before he starts having seizures again and we have to put him back on it, which needless to say is not good.  The Ativan is probably the only thing keeping us out of the hospital right now.  We still haven't heard back from our neurologist, so needless to say I'll be calling the nurse line tomorrow.  Again.  Hopefully we'll have a game plan soon, because I'd like my kid to sleep every once in a while!  Oh, and also quit having so many seizures.  That would be good.

In Which Connor Has A Great Time With His Daddy

So apparently the boys had a nice, relaxing time while I was gone.  I don't think they even left the house except for a quick grocery run-- pretty sure they spent a good portion of the weekend with Connor snuggled up to Jer while he played World of Warcraft.  I'm not entirely sure Connor even noticed I was missing because he was so thrilled with all the time he got to spend with his daddy.  Guess who the favorite parent is around here?  I'll give you a hint-- it's not me.  I'm pretty sure it has something to do with the fact that it's always Mommy who takes him to all of those appointments where they give him shots and draw blood and whatnot.  Mommies are bad about that kind of thing.

Connor did have a seizure Sunday and then another one today, so he's back on the Ativan.  I'm hoping we'll hear from the neurologist tomorrow about what exactly the game plan is going to be.  The little guy was in pretty good spirits today, but it was obvious the seizures are starting to take their toll on his body and he got exhausted in play pretty quickly.  I don't like the fact that these waves of seizures seem to be getting closer and closer together.  Obviously something needs to change.

Jeremy had the day off today so we got the chance to spend some quality time together, which was lovely.  Between his work schedule and my roller derby practices we're not seeing a whole lot of each other right now, so it was pretty nice to have a good chunk of quality time to spend with him.  And of course I had to spend some time making sure that Connor hadn't completely forgotten about me or anything, so he and I spent a few quality hours playing all sorts of fun games, like Superman and that one where you lift your kid way up over your head.  I'm pretty sure every parent plays that game.  It was one heck of an arm workout for me, but Connor loved it and we played it for quite a while.  Then he asked to go back to his daddy.

Figures.

~Jess

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.

~Jess

In Which We Have A Pretty Awesome Day

Okay, roller derby is officially awesome.  Not that I hadn't told you that already.  But after today it's, you know, even more awesome.

I had my first day of the Dockyard Derby Dames Bootcamp this evening, and I had a fantastic time!  And I didn't break my legs or knock my teeth out or anything!  All of the women I met were absolutely amazing no matter what their skill level.  I even found a girl who lives in my neighborhood so I can carpool!

The skill levels ranged from incredible skating veterans with killer moves to somewhere around where I am (at day five of skating).  We did a lot of drills, including falling, duck-walking, stopping (which I'm definitely still working on), and a lot of skating around the track. 

I was really nervous today anticipating how things would go this evening, but I'm so glad I scraped up the courage and decided to do this.  I'm having a blast, meeting some wonderful people, and on my way to being a derby girl! 

Connor also had a great day today!  School went really well for him; he was back to his usual giggly, happy self.  I talked with the neurologist today about the crazy seizures of yesterday and Monday.  He said that it sounds like maybe the Lamictal is changing the path in the brain that the seizures take.  We'll see what happens as we continue to increase it; hopefully the seizures will start tapering off.  If he starts having more of them after his next dose increase, than we'll go get his levels checked and see what's going on in there. 

At any rate, it was a great day for everybody!

~Jess

In Which Connor Has Still Another Seizure, And I Crunch Some Numbers

So Connor has apparently decided that he enjoys giving me mini-heart attacks on a regular basis, because he had another seizure this morning, and guess what I was doing? 

Yep.  Driving again.

This time we were on our way to the library, and were luckily right next to a parking lot, so it was only a matter of seconds before I had him out of the wheelchair and was in position for mouth-to-mouth, which I did for a couple of minutes this time.  I took him home afterwards-- so much for story time at the library-- and he took a four-and-a-half hour nap.

So I've taken the time to consult my records (what, every parent doesn't have a huge Excel spreadsheet they use to record significant medical events and medication changes in their kid's life?) and tallied everything up.  let's review the numbers, shall we?

Seizures In 2008: 15
    - number of those occurring after diagnosis of epilepsy: 1
Seizures in 2009: 11
Seizures in 2010 so far: 28
    -number of those occurring since July: 15

So in other words, in the past seven weeks Connor has had over a quarter of all the seizures he's ever suffered: an average of one every three and a half days. 

Not good.

After talking with the hospital last night, I spent a good portion of today believing that until we got up to a therapeutic dose of the Lamictal to see if it was going to be effective there wasn't anything additional we'd be able to do.  Connor won't reach a therapeutic dose of Lamictal for another three months due to the extremely slow titration schedule the drug requires.  So basically I was steeling myself for another stint in the ICU, because the way things have been accelerating that was the only way I could see this ending up. 

But I talked with the hospital again early this evening, and our neurologist decided that he can potentially add a bridging medication to Connor's regime if necessary until he's up to a therapeutic dose of the Lamictal.  This would mean that Connor would be on four seizure medications and would probably be a zombie as a result, but we can handle him being a zombie for three months if it means that he's not going to end up with brain damage from the whole not-breathing-repeatedly thing. 

I have no idea where this leaves us for school as of yet.  School starts up for Connor in two weeks, and I'm really hoping by then that he's not having a seizure every three days (or every day, as of the past three days) because if he's still doing it that's probably going to seriously complicate things. 

Keep your fingers crossed for us that we'll get this thing figured out soon.

~Jess

In Which Our Day Is Exponentially Better Than Most Of Last Month

Today it was back to business as usual! 

We did hear from the neurologist this morning, and he's got a new medication he wants to try Connor on.  However, the medication level has to be upped very slowly because the body has to get used to metabolizing it.  If it's upped it too quickly it can make all your skin fall off and die.  Um, ow.  So Connor will be building up to a therapeutic dose of this medication over an eight week period, while slowly weaning down off the Trileptal.  I don't want to get the name of the stuff wrong and we haven't received orders for it yet, so I'll wait to tell you the name of the new medication until it's sitting in my hot little hand.  I also spent three hours on the phone with the insurance company, because they are convinced that our pediatrician who moved away over two months ago (I believe she is currently in another country now, so that's about as far out of pocket as you can get) is still Connor's primary care manager even though she doesn't have any appointments available and obviously is not commuting to the hospital.  That would be a long commute.  So they won't assign us another one until we can prove that she is no longer here.  And we have at least three appointments we need to make with specialists, which require referrals from said pediatrician.  Also we have eight billion pieces of paperwork we need signed, also by said pediatrician, for school.  And did I mention that school starts in a month?  Glorious.

So anyway, to cheer me up after all of the hoops I had to jump through, we went to the library today and I let Connor pick out a new theme box for the week from a couple of choices.  He pounced on the "Fun With Music" box, and when I started pulling things out of it at the library to make sure they were all there before checking it out, he got really mad that I wouldn't let him play with the super-fancy keyboard (which I discovered when we got home is the Loudest Keyboard In The World) immediately.  So he started shrieking at the top of his lungs.  Still in the library. 

We checked out really quickly.  Connor trumps the keyboard in both the volume and the nails-on-chalkboard categories.

Then Connor and I sat down together outside and had what was probably a totally ineffectual conversation on appropriate behavior in the library.  And then we went on the swings, because they were there and about halfway through my lecture he stopped paying attention and started asking for swings instead.  I am completely incapable of denying my child something if he goes to all the trouble of asking for it, even if it is during my lecture about playing The Loudest Keyboard That Ever There Was in the middle of the library (though I guess I did deny him the keyboard, so maybe I just thought going on the swings sounded like a good idea).  Oh well.  He had a great time on the swings and burned off some energy, and then as a result I was able to actually go sit down with him in Central Perk-- one of my local haunts-- and read one of the random books I'd managed to grab off the library shelf as I rushed past with my firetruck-imitating child towards the check-out station.  It probably helped that I stuffed the kid half-full of gooey warm brownie as I was reading. 

Yes, I was a virtual paragon of fantastic parenting today. 

Anyway, then we went home and surveyed the sheer awesomeness that is now our front lawn, which put me in the best mood ever-- even a better mood than I was already in from the swings and the reading and the brownie and whatnot.  See, when we bought this house it was for three reasons:

1) It was in the Puyallup school district.
2) It was a rambler.
3) It had a bathroom that could be converted for wheelchair access.

That was it.  We didn't buy it because it was in a good neighborhood or had a layout we were particularly pleased with.  It was one of two houses we had to choose from in our price range that fit the criteria above in the entire city of Puyallup when we needed to buy, and nothing else-- even whether or not we liked the house-- had anything to do with our purchase.  Which is a really weird way to buy a house, if you think about it.

So anyway, we totally lucked out, because not only is our house now the most awesome house in the world and quite possibly the universe thanks to these people, and also these people, as well as all of these people, but our neighbors are also awesome.  I'm not just talking about neighbors who will wave at you when you go by in your car, stop on the sidewalk to talk to you, invite you over for dinner and barbecues, and even do a bunch of weeding and take your yard waste to the dump for you.  They do all of that awesome stuff, of course.  But these are neighbors that are so incredibly awesome that when they find out what an unbelievably horrible month you've been having and that you're having trouble keeping up with the front yard because you are spending all of your free time attempting to use massive amounts of chocolate to induce an amnesic state or possibly a coma as a defense mechanism instead of doing chores, they have people come in and clean up and mow and mulch and weed and trim and put new stone down at the curb and make your yard look about 8,000 times more awesome than it has since you moved in, and possibly better than it ever has in the history if its existence.  Yes, we're talking that awesome.  And then they refuse to let you pay for anything.  See how awesome our neighbors are?  I believe they are off the scale.  I would take pictures of it for you so that you can see just how amazing it looks right now, but then there would be pictures of the front of my house on the Internet.  So you'll just have to imagine the awesomeness.

So anyway, how's that for a fantastic day?  It involved the library, swings, a coffee shop, brownies, seriously awesome neighbors, a great looking front yard, and, maybe best of all, a happy, relaxed, seizure-free child.

Things are looking up!

~Jess

In Which Things Are Much Improved

Oh, today was so much better.

No seizures.  No hospital trips.  Our lethargic, crabby child was replaced with an energetic, happy one.  We had respite care and worked on the deck.  I got a massage.  I consumed massive amounts of chocolate. 

Really, I'm not sure the day could possibly have been improved upon, unless maybe it included unicorns.  Because unicorns are awesome.

But I digress.  So Connor is back on the one-seizure-a-week instead of three-seizures-a-day medication until we can get a new medication, one that will hopefully involve no-seizures-a-week, figured out.  With any luck this figuring out will happen tomorrow; we'll just have to see.  In the meantime I'll be getting us back to our usual routine, albeit slightly curtailed (no trips more than 40 minutes away or so) instead of holing up in the house and hovering over Connor freaking out if he doesn't move for more than five seconds, which is what I have been doing for the past two weeks. 

So I think we've reached our drama quota for the next six months or so.  Seriously.  I'd like to go back to writing about, um, bunnies.  Or carrots.  Or very small rocks.  Or basically any nice, sedate thing that isn't going to involve me having to breathe for a small human being who keeps trying very hard to die on me at random moments.  Because I've been writing way, way too much about that lately, and frankly the topic is getting old.

So thank goodness for the quiet, very-small-rock-contemplating sort of day we had today.  We needed it.

~Jess

In Which We Have An Extremely Long Day, But Figure Some Things Out

Long, long day today, but I think we might have made some progress.

It didn't start out so hot.  I went down to one of our little coffee shops to get Jer and I some breakfast-- one that we visit pretty often and so are fairly well known at.  I'd been in the day before and so they knew Connor was having some issues, and they asked about him.  One of the customers in the store chimed in.

"Your son has seizures that make him stop breathing?  My nephew has those too!"

"Wow," I said.  "That's kind of a crazy coincidence.  Connor's seizures are really rare, so we almost never hear about anybody else with his type."

"Yeah," the guy said, "they sound just like his.  How old is your son?"

"Four," I replied.  "How old is your nephew?"

"Oh he died two years ago."

Yeah, that's right.  He died.  Two years ago.  From the seizures.

Well, that just made me feel a whole lot better, right there.   Just what I needed to hear.  What a pick-me-up of a conversation.

Anyway, so I went home, and Joanna and Jake came over around 11:00 to watch Connor and work on the deck, respectively.  Jer, Jake and I had only been outside for about twenty minutes when Joanna yelled through the screen door that Connor was having a seizure.  This one didn't last very long-- only about twenty seconds-- but there was no way I was going to wait until Monday to talk to a neurologist.  I called the hospital and had the neuro on-call paged.

He got back in touch with us in about ten minutes, took down all our information, and told us he'd review Connor's files and get back in touch with us as soon as possible.  Once he called back, he didn't waste any time helping us put together a game plan!  The first thing we needed to do was get these seizures stopped, so he called in a prescription for a few low doses of Ativan to our local pharmacy and told us to go ahead and give Connor one dose now and another if he had any more breakthrough seizures.  Then he asked us to go into our local emergency room and get a blood level of Connor's latest seizure medication, Tegretol, drawn to see whether or not Connor was getting what they call a "therapeutic dosage," i.e. a level that fell within the desired range to stop the seizures.  If Connor's body was metabolizing the medication in a weird way, then the levels might not be high enough to stop the seizures and that might be the reason why it wasn't working.  If he was getting enough Tegretol but still having these seizures, then it would mean that the medication had failed and we should try a different one.  Once we got the blood levels back (which would probably happen tomorrow) we could give him a call and figure out where to go from there.

He wanted the blood levels drawn at about 5:00 pm because this is when Connor would have the smallest amount of drug in his system.  It was about 12:30 in the afternoon when we got off the phone with him.  I ran down to the pharmacy and grabbed the Ativan, which we gave Connor as soon as I got home.  Then we started getting ready to go down to the ER.  We figured that if we needed a blood draw at five, we needed to get there at least three hours early because we'd probably be at the very bottom of the queue for treatment, since Connor (thankfully) wasn't actively seizing, experiencing acute trauma, etc.  The last thing we wanted to do was march in half an hour before he needed his blood drawn to a busy ER and demand to be seen before everyone else waiting because we had a time limit.  So we drove down there around 2:00, forgetting in the process two things. 

The first was that this was our local private community hospital and not a giant state hospital, so the emergency room wasn't as likely to be crowded.  The second was that when you bring in a sedated (the Ativan knocks Connor for a loop) four year old, plop down a six-page list of medical conditions and say the phrase "resuscitated three times yesterday" medical personnel tend to take note.  We had a bed in the back in ten minutes and the doctor saw us five minutes later.  Whoops.

So we spent about three hours hanging out in our nice little (private!) room, with the nurses popping in occasionally to make sure we didn't need anything and to coo over Connor, who as usual quickly won the affections of every female person in the vicinity due to his overwhelming aura of cuteness.  Once 5:00 rolled around they drew Connor's blood, and while unfortunately it took three sticks (and the last one was right at the base of his palm-- not a pleasant place to have blood drawn from) he was an extremely brave little boy; he didn't even cry for the first two pokes!  They ran his levels and gave us the results ten minutes later-- how's that for amazingly fast service?

So it turns out that Connor's Tegretol wasn't too low.  It was actually too high-- and by a pretty substantial number.  Keep in mind that this medication was drawn when Connor's seizure medication blood level would be at its lowest point for the day, and you can see that this was a big problem.  Even though we'd originally planned to call the neurologist back the next day, the ER doc asked us to hold Connor's evening dose of Tegretol and call the neuro back immediately to figure out what he wanted to do.  Then he printed out a copy of the levels for us, had us sign a single piece of paper, and we walked out of the emergency room twenty minutes after the blood draw was done.  Least traumatic ER visit ever.

So we called and had the neurologist paged on the way home, and he called back shortly after we walked back in the door.  After hearing the results, he told us that there was no doubt then that the Tegretol was failing to do its job, and not to give the little guy any more.  Then tomorrow we're to switch straight back to giving Connor Trileptal, which is what he was on before the Tegretol.  One seizure a week, which is what he was having on the Trileptal, is a heck of a lot better than three a day.  Hopefully that medication change will tide us over until Monday, when they'll put together a new game plan for how to proceed.  We're supposed to call and update the neurologist on-call tomorrow to let him know how things are going.

So in conclusion, progress is being made, which is a very good thing.  But it was a long, long day and I'm sort of glad it's over.

~Jess

In Which Things Continue To Go Downhill

Connor had three seizures today.  I am seriously not liking this trend.

This morning Connor's neurologist had us drastically up the Tegretol, in response to the seizures from earlier in the week.  He had the first one today at about a quarter after one in the afternoon-- an hour and fifteen minutes after his first dose of the elevated med.  It was about thirty seconds long.

The second came around three in the afternoon; I had ducked out of the house to run some errands and left Connor with our very competent respite care worker, who called me as I was picking up some munchies at the grocery store to let me know he was seizing.  I deposited my half-full shopping basket into the hands of a startled clerk with a hurried excuse and dashed out of the store to jump in the car and head home, liberally cursing every red light.  Joanna called me when I was about half-way there to let me know it was over and I didn't have to rush.  This one ended up being about two minutes long. 

The third one was around six in the evening; about ten minutes after Connor's last dose of meds.  Jeremy and Connor were lying on our bed singing a song in preparation for Connor's bedtime when Connor suddenly stopped responding.  This one lasted about two minutes as well.

We didn't hear back from the neurologist tonight, so hopefully we'll hear something tomorrow.  I have the number to page the neurologist on-call for the weekend, so if he has any more tomorrow (which is unfortunately extremely likely) we'll be calling it in again and with any luck we'll be able to get a quick game plan.  It's a catch-22 sort of situation; it may be that Connor's new seizure medication is actually triggering the seizures rather than helping (in the two weeks before the med change Connor had two seizures, and in the two weeks after the med change he's had eight), but sudden withdrawal from Tegretol is extremely likely to cause-- you guessed it-- seizures.  And that's even with starting a new seizure medication at the same time.  Then again, it may just be that the medication is ineffective or isn't a high enough dose. 

So I'm not sure what needs to happen, but whatever it is, it needs to happen soon.

Connor is, obviously, exhausted and extremely crabby.  I'm quickly getting that way; there are only so many major adrenaline highs you can have in one day before you start becoming kind of burned out.  Tomorrow we have respite care and Jake is also coming over to work on the deck, so there'll be four of us here, which will be nice because there will be plenty of people if we end up with an emergency.  The last time Connor had this many seizures in one day was back in January when he went status.  While I'm really, really hoping that's not what we have to look forward to tomorrow, given his past history I'm pretty worried that's where we're going to end up.

Though I may spend a good portion of tomorrow napping instead of helping with the deck, as I'm anticipating about a four-in-the-morning wake-up time for Connor.  Since he always sleeps for a while after having a seizure, he napped for seven hours today.  I'm happy to report that I spent none of that time doing housework and a substantial portion of it eating Ben and Jerry's straight out of the carton, as well as some rather delectable brownies.  I'm sure you are all glad to know I have my priorities straight.

Keep us in your thoughts and prayers, folks.  We could sure use them over here.

~Jess

In Which Connor Has Another Seizure And We Experience A Milk Explosion

I had just finished strapping Connor into his wheelchair today so that we could go pick up a prescription renewal of his at the pharmacy when he slumped over in his chair.

Yep.  Seizure.

I always freak out a little when he has a seizure in his chair because when he's upright it cuts off his airway pretty immediately, and also because it takes me a little while to get him out of all the straps.  So I wasn't thinking about the fact that he was plugged into his g-tube pump when I hastily undid everything and yanked him straight out.

His g-tube, connector still attached, popped out of his stomach.

Picture the scene, if you can.  I'm holding Connor, who is already turning blue-gray and about to stop breathing at any second.  The g-tube hole, now open on his stomach, is fountaining Pediasure all over my shirt, arms, and the floor.  The pump, still turned on, is busily pumping more formula onto my pants.  The cats are going nuts because they can't figure out why the heck we're throwing good food all over the floor.  Once I start mouth-to-mouth, I have to try and fend Loki off with my foot because he keeps trying to come up and investigate.

Not one of our brightest moments.

By the time I got him breathing again (the seizure lasted about a minute) and was ready to deal with the pump and the g-tube, it looked like Connor and I had gotten into a milk fight or something.  And of course he was extremely sleepy and crabby, and didn't particularly appreciate me reinserting his g-tube or giving him a shower. 

So that was my wonderful day.  We've got a call into the neurologist and hopefully we'll hear something back tomorrow, as Connor has now had five of these things in the last two weeks.  Lovely.

We could use some good thoughts this way, folks.  Also some more mopping solution.  I get the feeling I may need it.

~Jess