Archive | July, 2008

Reality is a crutch for people who can’t handle drugs

30 Jul

I saw this quote in a bathroom stall once, and it made me chuckle even though I’m so not a drug user of any kind.  Okay, I like my coffee on occasion, and I admit to craving beer and rum during this pregnancy (to which I say, “WTF?” because I don’t even like beer).  But somehow I doubt that’s what Lily Tomlin had in mind when she said this.

Reality these days is that Jade has to take a whole lotta drugs multiple times a day, and today was her first day on Clonazepam.  The day did not start off well. 

I got up at 4:30 when she gasped a couple of times, but fortunately it didn’t turn into a full-blown seizure.  Still, I decided it would be better to bring her into bed with us, so we witnessed her little seizures at 6:16, 7:00, and 7:20, making for a fitful night.  While I was getting her diaper changed in the morning she went into a full tonic clonic seizure that lasted two and a half minutes and caused her to pee all over me.  I bawled as I rocked her for the 10 or 15 minutes it took for her to recover.  I told her she wasn’t allowed to have another bad seizure day.  Then we went upstairs to have breakfast and I gave her the sedative.  I had decided to stay home with her, since we had no idea how she would react to the new drug, and I didn’t feel comfortable putting that responsibility on the daycare.

I didn’t witness a single seizure all day.

It’s too early to tell if this is really how the drug is going to work, or if this just happened to be a good day.  There are still a number of potential side effects and longer-term effects to think about.  But, damn, we needed to have a good day. 

Thank.  God.

Jade rides again

29 Jul

I’m not really sure how to start this post. 

There’s the “bright side” approach:  Well, we don’t have to worry about Jade having Parkinson’s, nerve pain, or restless legs syndrome… 

Or there’s the “jolly” approach: Wow, Jade got to have her sixth ambulance ride today!

I suppose there’s always the matter-of-fact approach: Jade was having back-to-back seizures today, for a couple of hours in the morning (the daycare called to let us know and we decided to take her home) and then again in the afternoon.  After calling the BC Children’s hospital, we were advised to administer the emergency Valium (our last ampule) and call for an ambulance.

It doesn’t sound nearly as fun that way, though, does it?

Jade and Michael rode down to the hospital together again while I packed things up in case they would be there overnight.  I chastised myself as I did so because after Friday’s chaos, I decided it would be a good plan to have overnight bags packed so they’d be ready to go at a moment’s notice.  I just never got around to actually putting that plan into action, so here I was again scrambling to remember everything.

This time we saw Dr. Tadepalli at Emergency.  (Perhaps Jade is trying to meet every Emergency doctor there is.  If that’s the plan, then this trip was a waste of time, since we’ve met Dr. Tadepalli before — he’s the one who told us a year and a half ago, gently and empathetically, that Michael’s visiting Granny hadn’t suffered a stroke, but had a brain tumour.)  Dr. Tadepalli managed to become familiar with Jade’s medical history in a very short period of time — Michael said he already knew all about her when he went into the room to see them.

After Friday’s major seizure, the neurologists in BC had recommended that any further big seizure activity would warrant starting Jade on a sedative once a day (Clonazepam, in her case, which is also used to treat the other conditions I mentioned at the top of the post).  Dr. Tadepalli felt that this would be the right course of action to follow now, especially since we observed that the Valium on Friday suppressed her seizure activity for the rest of the day.  We’ll also be getting Jade’s blood tested again for drug levels in the next few days.

We have misgivings about giving her such an addictive substance, but today was such a bad day for Jade… I’m not sure we can survive too many like it.  There may be alternative treatments (like the ketogenic diet, for example) but they’re also hard to live with.  I have too many questions and thoughts in my head right now, and it’s past my bedtime, so I will wrap up.

I know this place used to be a lot more fun.  I had all sorts of fun things to tell you about, too, like the music camp classes I’ve taken so far, and our first pre-natal visit with Heather the midwife, and Michael hearing Nugget’s heartbeat when he put his ear to my belly.  There’s good stuff coming, I promise!

But for now, the really good stuff is a good night’s sleep.  Hope you’re getting it, wherever you are.

Home in the sunshine

27 Jul

I’m afraid I’ve been a bit remiss in not updating since Friday.  Thanks so much for all your messages of support; it helps immensely.

Jade had no further seizures on Friday, not even small ones, which was most likely because of the Valium in her system, as it hangs around for quite a while.  Saturday was back to normal with a number of small seizures in the morning and a few scattered thoughout the day.  Dr. Stuart kindly answered a bunch of questions we had and wrote up a new prescription for our now-depleted supply of emergency Valium and then we were discharged, getting home around one in the afternoon, just in time for Jade’s nap.  We managed to get one of the baby monitors functioning, so Michael and I had a lazy afternoon lounging in the backyard, enjoying a rare day of sunshine in this summer of rain.

Perhaps it’s the sunny weather (another beautiful day today) but our optimism seems to be back.  Jade’s bedtime Valproic Acid got boosted again and although it’s too early to tell just how effective this will be, she had a great day today (a total of nine small seizures) so we’re off to a good (new) start.

We’ll just keep our fingers crossed for more good days.

24 hours

25 Jul

I just got a call from Michael; he and Jade will be in the hospital for 24 hours of observation.  After being in touch with Dr. Demos (the pediatric neurologist in Vancouver) they want to keep a close eye on her and increase her evening drug dose yet again.

After talking to Dr. Demos, Dr. Stuart (the doctor at Emergency this morning) asked Michael if they had ever told us that the type of epilepsy Jade has is hard to control.  Michael doesn’t remember ever hearing that, and neither do I.  Maybe they were trying to bolster our optimism; the impression I always got was that there was a good chance of controlling her seizures.  But I suppose the definition of “controlling” was never really explored.

If Jade has another major seizure in the next few days, they’ll be adding a drug and sending her down to BC immediately.  It’s so frustrating feeling like we never get the whole story.

Covering me in butter

25 Jul

It’s 9:40 a.m. and I just got to the office. Jade had a major seizure this morning as we were getting ready for the day, necessitating another call to 911. Michael went to Emergency with her while I finished getting ready and assembled some breakfast for him. He and Jade are still at the hospital, but he expects they’ll be discharged sometime this morning. Jade is in a sleepy and dazed post-ictal state and apparently her blood sugar was low (they pricked toe her in the ambulance) but otherwise seems okay.

I’ve got to get some work done, so I will leave you with a post I wrote a few days ago, which is a follow-up to yesterday’s entry. A little humour is definitely needed here to brighten up the day.

********

So, you may recall that I posted yesterday that Michael was trying to “cover me with butter”, a mangling of the idiom “butter me up”. This goes back to a story that Michael’s mother told us a few years ago, which has evolved into an inside joke in our household.

(Marian, forgive me if I’ve fudged some of the details; I don’t remember them exactly, but I figure they don’t matter too much.)

Marian works for a dentist, and we all know dentists make pretty decent money, especially when they’re competent and have established a reputation for doing good work. The boss had hired a pleasant East Indian woman to do some cooking and cleaning, and it seems he and his wife were very happy with her. He gave her some lavish compliments on a meal she had cooked one evening; she was pleased but rather flustered, and replied (and if you can do an East Indian accent, you must use it here): “Oh, sir! You are just trying to cover me with butter!”

I love this story! It reminds me of when I was trying to learn German in Germany. I remember one of the girls in my class reading a note I’d written, in which I’d made some kind of spelling mistake, and she thought it was so cute she said, “Oh, wie suess!” (“Oh, how sweet!”) Sometimes the challenge of speaking another language creates new expressions that are somehow are better than their originals.

Isn’t “covering me in butter” just so much more fun?!

(Belly) laugh of the day

24 Jul

My boss of the past three years is retiring this week; he’s been a really great boss and I’m sad to see him go, as are many others in our organization.  Today, a number of us went for lunch at the Klondike Rib & Salmon for a send-off lunch. 

I ate the food I ordered, plus stole fries off of other people’s plates (because I was well-behaved and ordered salad as my side).  As I’ve said before, being 5 months pregnant leaves me with a lot less room for food.  By the end of the meal, I had eaten rather more than I should have and was feeling slightly uncomfortable. 

Two other women walked in as I was exiting the restaurant, rubbing my swollen belly and moaning to my co-worker about over-eating.  One of women looked and my belly and quipped, “Woah!  You really ate a lot!”

3 Things

24 Jul

Last week, Carole at Yukon Chatterbug tagged me for a meme, and I’m just getting around to doing it now.  Here’s how it works:

You have to ask your significant other to tell you three things that they know about you and then publish this information on your blog. You also have to pick more victims and then go to their blogs and leave them a comment, letting them know that they have been tagged. The comment must end with the word ‘pthththth’. I don’t know why, I am just repeating what I was told.

Michael already did his response last week.  He actually IMed me because he couldn’t wait for me to get home to tell him three things I know about him.  And then this is what he said about me:

Michael says:
You:
- are stronger than you think you are.
- are always right.

Fawn says:
??

Fawn says:
are you being sarcastic?

Michael says:
No.

Michael  says:
- steal the show.

Fawn says:
steal the show?

Michael says:
Yes.  Every time you perform, people stop whatever they’re doing to be awestruck by your awesomeness.

Fawn says:
I think you are trying to cover me with butter.

Yes, I know the expression is “butter me up”, but there’s another story behind that one, which I will save for another day.

There you have it.  The things Michael will say when he wants to get lucky is asked what he knows about me.

I guess I’ll pick another couple as victims.  They haven’t been blogging much lately (probably because they’re wasting time decorating their brand new house or parenting their almost one-year-old or something equally silly…) so perhaps this will motivate them to get back on the horse again.  Peter and Rachelle: you’ve officially been tagged.

Deciding to choose a midwife, Part II

23 Jul

Way back in May, just before all hell broke loose with Jade, some of you, dear readers, may recall that I was trying to decide whether to make the leap and go for midwifery care. I’d already started thinking that I’d like to have a homebirth with Nugget, but somehow I still wasn’t feeling strongly enough about it to actually commit. Well, I’ve had a good two months to mull over it (and lots of time in hospitals!) and finally decided to go for it.

I e-mailed Heather to ask her if she could still take me on as a client (there are a whole slew of babies due this fall, apparently) and she enthusiastically replied within hours; not only that, but she told me she just recently moved into my little neighbourhood! How handy is that, to have your midwife living a 5-minute walk from your house? It seems like a sign that this must be the right decision.

Epilepsy update

22 Jul

I’ve been getting quite a few inquiries about how Jade is doing, so I guess it’s time for an update.  There’s no way to say concretely at this point if she is truly “better” or “worse” — she’s still having seizures every day — but I think that as a family we are coping with it better, so that’s gotta count for something, right? 

We’ve been in pretty close contact with the neurologist’s office in Vancouver and have made some adjustments over the last couple of weeks.  Because of the amount of seizure activity we were observing a few weeks ago, Jade’s drug dose was increased a couple of times.  She also had some bloodwork to check the level of drug in her system, and we learned it hadn’t yet reached a “therapeutic level”, so it’s not surprising that the seizures are still coming.  She’ll be tested again in a few weeks and we’ll compare that to the seizure activity we’re observing to make an assessment of how well the drug is working.  Her neurologist’s appointment and follow-up EEG have been moved from mid-September to late August, to our great relief.

Other things we’ve learned:

  • it can take up to two months for the Valproic Acid to reach a therapeutic level (assuming the dose is high enough)
  • general “spaciness” can be one of the temporary side effects of the drug 
  • colds and viral infections can cause more seizures than normal (even seizure-free patients sometimes see a return of seizures, apparently)

Because our, ahem, ”summer” weather has been so wet and cold, everyone in Whitehorse has been passing colds around; Jade certainly hasn’t been immune to them.  We’ve really noticed a difference in the seizure activity depending on how healthy or sick she is.  In a way, it’s encouraging, because if we see things deteriorating we can at least have a clue as to the reason.

I think that’s the real curse of Jade’s epilepsy: the not knowing.  As parents, it’s hard not to be able to know why things happen.  They tell us it’s not a structural problem (no tumours — great!) and that it’s not a biochemical reason, but how could they possibly know every last environmental factor that might cause seizures?  Yes, her epilepsy might be genetic (their assumption) and it could be caused by one gene or multiple genes interacting together, so there’s no real point in testing to figure it out.  But couldn’t it just as well be something she was exposed to when she was in utero?  Or something she’s exposed to every day at home?  I know it’s useless for us drive ourselves crazy, but it’s hard not to look around and think, “Maybe there’s mold in the walls.  Maybe our cleaning products are making this worse.  Maybe she’s got a food sensitivity.”  Yes, we’ve actually had someone come in to test the house for mold.  And we switched her to goat’s milk, but found that avoiding dairy altogether is so hard, we’ve given up on that.  (There were reasons for trying this, I promise, but it’s just too long a story.)  Still, the guilt and the sense of culpability is easing and I know I’m feeling more hopeful that once the medicine reaches a good level in her system, we’ll see an end to the endless seizures.

In the meantime, Jade seems to be developing.  She’s learned some new words and expressions since the onset of her epilepsy (though we still think she may be a bit behind verbally), and she’s learned how to put her pants on by herself (mostly — the hind part never gets pulled all the way up), not to mention how to take her clothes off by herself.  She’s not gaining weight at an alarming rate.  She’s excited about my growing belly and recently started “breastfeeding” her dolls.  It’s so heartening to see that she keeps learning.

I sometimes wonder if people think we’re making this all up.  On good days, Jade may go for hours with no seizure activity.  And most of the ones that happen later in the day are so mild, others don’t even notice them.  Her arms will jerk a couple of times and I’ll say, “There, she just had a seizure.”  And the other person will say, “Hunh?  I didn’t see anything.”  Or she’ll have an absence seizure (basically she freezes what she’s doing, often with her eyes rolled up a bit and her mouth hanging open a little) and I’ll say, “Whoops, she’s having a seizure.”  And the other person will say, “Really?  I thought she was just kind of spacing out for a moment there.”  They’re not always this mild, but the milder and more infrequent they get, the happier I’ll be, that’s for sure.

Curse of the baby monitor

20 Jul

When Jade was born, we didn’t bother getting a baby monitor.  At first, she slept either with us in bed, or right beside me in a cradle.  Later, we still didn’t need one because her room was on the main floor of the house, where we spent most of our time, anyway.  And I was so tuned into her cry, I could even hear her from the yard outside.  (Or perhaps that’s just a sign of poor windows…)

At some point, though, it did become necessary to have a monitor, so we conceded grudgingly by buying the cheapest one we could find.  I did pretty close to zero research.  I spent $20.  I brought the thing home, plugged it in, and it worked.  I could hear Jade’s very breathing, even if she was in her basement room at the back of the house and I was in the front yard.

About two months ago, the darn thing started acting up.  Sometimes I’d turn the “Parent Unit” on and a loud buzzing sound would ensue.  We’d plug it in somewhere else, we’d change channels, we’d go set up the transmitter unit, all to no avail.  Sometimes a sharp whack on the counter would get the Parent Unit working.  Sometimes not.  I finally decided never to turn it off, just to turn the volume all the way down when the thing wasn’t in use, but that didn’t seem like a good solution, and I didn’t really trust the set-up.

I made a visit to Canadian Tire one day to find a new monitor.  There was the $20 model again.  Then there was a $45 dollar model by the same brand.  Being disgruntled (because I figure a baby monitor should last more than 18 months or so) I didn’t want to use the same brand again.  Instead, I picked up the only other available non-video monitor.  It was made by a famous baby products brand and cost a whopping $99 — plus tax!

I was excited, though.  The transmitting distance was supposed to be something like 1000 feet, and it promised the clarity of all! new! digital! sound! The thing came with a rechargeable base so that we wouldn’t have to hunt around for 9V batteries when we wanted to take the Parent Unit with us. 

Unfortunately, it required 16 hours of charging before the first use.  I put the unit on the charger, and three days later finally remembered to set up the transmitter.

It was a disaster.  Instead of Jade’s breathing, all we could hear was static.  When she would talk we’d hear “*crackle* …?”  and then “*crackle* …!”  We could tell Jade was saying something, but not what.  In vain, we set everything up again, tried different outlets, changed the channel… nothin’ doin’.  By this point, I’d thrown out all the packaging, but fortunately, I still had the receipt.  Canadian Tire took it back without batting an eyelash.  (The clerk didn’t bat an eyelash, that is…)

I was starting to think 18 months of clarity sure beat out the expensive monitor I’d been fortunate enough to get rid of, so I decided to try out the $45 model.  What I really liked about this one was that it had TWO Parent Units.  Once Jade moves to her new room, this will be very handy.  We can keep one upstairs in the kitchen, and one in our bedroom, which will now be at the other end of the basement from her.  (I know she’s a toddler, but she’s a toddler with epilepsy, and I don’t like the idea of not keeping tabs on her at night.)

I brought the thing home yesterday, plugged it in, and it worked.  I could hear Jade’s breathing again.  Haha!  Cheap triumphs over expensive!  Analog triumphs over digital!  Mama triumphs over the evil baby monitor!

Until tonight, that is.

The gremlins are back.  Something is causing static on the Parent Unit.  I’ve tried changing the channels, resetting the transmitter, turning both ends on and then off again.  There seems to be interference coming from somewhere, but I can’t figure out what it could be.

It’s almost enough to make me think we need to exorcise the house.  Argh!

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