Tag Archives: seizure

E-mail to my godparents

6 Jun
Hi again K.C. and Janet,
 
Well, it looks like Michael and Jade will be staying in Vancouver until the middle of next week for more testing.  They’ve now been admitted to the hospital to make the testing more convenient.  Jade has to have another spinal tap and more blood tests, chromosomal testing, an MRI, some more EEGs, and goodness knows what else.  The neurologist thinks she’s having “myoclonic seizures” and wants to switch Jade to a different kind of medication (Michael thinks she said “Valproic acid“) that is more effective for this type of seizure.  But it has some scary potential side effects. 
Apparently the EEG showed that Jade is sometimes having seizure activity in her brain without having any other symptoms that we can see; the neurologist is concerned about these seizures because if they continue, they could slow Jade’s development.  (And it makes me wonder… how long have they been happening?)  Michael suspects the doctor’s also concerned that Jade’s condition could deteriorate, but she’s not saying so.  Instead of feeling better, I feel overwhelmed by all the information, and scared about what it might all mean.
 
Michael is frustrated about being in the big hospital; he’s only spent a day there and he says he already feels “lost in the system”.  We had such great, personal care here in Whitehorse, so I think that makes it even harder to be an anonymous patient in a big, unfeeling hospital.
 
They didn’t finish with the neurologist until almost 6:00 p.m. and then they got checked into the hospital.  Michael asked over and over again for food to be sent to them, but the helpful response he got to his questions of,  “Is it coming?” was, “we hope so.”  He finally went to the cafeteria 10 minutes before they were going to close and found there was only wilted salad left, so Jade had a couple of pieces of chicken and a pile of croutons for her supper.  Then he got her into the crib in her clothes because all the luggage was still back at Ronald McDonald House.  After she fell asleep, he rushed back there to get their stuff, plus do the “checking out chores” like washing the sheets and disinfecting everything, part of the rules for staying there.
 
I know it’s a long way from Surrey, and I don’t think anyone knows the schedule for all the tests they’re planning to do, but Michael said he would phone you.  If you can get down to see them, would you please bring them some food that they can keep in the room?  I hate to ask for favours, but I know it would really help him out a lot.  I don’t think he’ll be able to get out to do any shopping, and he gets hungry without snacks, plus he might be running out of snacks for Jade.  I don’t know if he has access to a fridge or not, but I hope so because we always kept milk around for Jade. 
I really wish I could be there to help — one of us could have stayed with Jade while she fell asleep while the other went to get the luggage and do the house chores.  I feel so helpless here.
 
They’re at the BC Children’s Hospital but I’m not sure where because they’re probably moving rooms tomorrow.  I wouldn’t try phoning before 9:00 a.m., just in case they somehow manage to sleep in.  Michael could sure use some rest.
 
I hope you get to see them, and if you do, please give both of them a hug for me.
 
Lots of love,
Fawn
Advertisements

Fawn is a leaky faucet

5 Jun

I wonder if I would be so emotional if I weren’t pregnant?  Monday night when I dropped Michael and Jade off at the hospital after a great day out on a day pass, my heart just about broke in two.  Jade took one look at the hospital doors and started crying, trying to keep Michael from unbuckling her out of the seat, and sobbing, “No want!  No, no want!”  Michael and I agreed later on that night to get her discharged the next day.

Funny enough, on Tuesday night we were headed for her room to get her ready for bed and I exclaimed to her about getting to stay home that night.  “Or do you want to go back to the hospital and see Claire?” I joked.  (Claire is one of the wonderful nurses we love who was on shift that night.)  She turned around, zipped up the stairs, grabbed her jacket and kept pointing to the door saying, “Hosh’el?  Hosh’el?”  (That’s “hospital” for the non-Jadeish-speakers.  It actually took me a minute to figure it out, myself.)  Kids.

As previously mentioned, Michael won the coin toss for the trip to Vancouver.  (And no, we’re not always that civilized in our decision-making.)  I know it’s really the best decision — there’s going to be quite a bit of hauling luggage around for the trip (not to mention likely sleep deprivation) and Michael’s in better condition to do it, plus I’d have to use up special leave at work.  And the Big Band is performing at the Alsek Music Festival on Saturday afternoon; it’s a little easier for us to make up for a missing fourth trumpet than to have the only piano gone.  (I mean, they can do it, but the song selections probably would have been different.)  All very good reasons to be glad Michael won.  But that didn’t stop me from crying as I watched them go through security about an hour ago.

Part of it, I think, is that although I’ve left Jade before (for a week to go on a course, and I got rather emotional then, too) she’s never left me.  The other part of it is that two minutes before joining the security line-up, Jade had another seizure.  Really, it wasn’t a big one, but it’s the biggest one she’s had in several days, lasting about 35 seconds and affecting her whole body.  Michael and I were both dismayed, as we’d hoped that the medication would be enough to keep her down to the 1 to 5 second involuntary arm-twitching type seizures.  (We’re aware that that’s probably naïve; it’s quite realistic that she might need to be on several types of anti-seizure medication.)

Michael and Jade will be arriving in Vancouver in less than two hours.  Then they’ll find some food, get some milk (I hope), and head for Ronald McDonald House for the night.  Tomorrow I don’t expect to hear from Michael until sometime in the evening after the EEG and visit to the neurologist are all over.  Just how distracted do you suppose I’ll be all day tomorrow?

Checking in

31 May

This blog is pretty much a one-topic website this week and I’m afraid I’m not breaking the pattern just yet.  However, it’s been a good day overall, so I thought i’d just make a quick update before popping off to sleep (lightly).

I took the afternoon off work yesterday afternoon to come relieve Michael at the hospital, who has basically lived here with Jade since last Friday.  Although I slept very little last night, I had some respite this afternoon when Cheryl (from Jade’s daycare) came to give me and Michael a break for a few hours.  God bless the woman!  I went home and napped for an hour while Michael worked a minor miracle and got the kitchen looking somewhat presentable again.

In other good news, some of you may already know that we have a date with the pediatric neurologist and EEG in Vancouver next Friday.  Since the original non-urgent referral was supposedly going to take 1 to 3 months, this seems amazingly fast to me, and I am grateful to Dr. Avery and Dr. Patel who pushed hard to get Jade down as soon as possible.

We’re also going to get some freedom from the hospital by tomorrow.  Actually, if we’d wanted to, we could have been fully discharged by now, but Michael and I feel somewhat safer being at the hospital at night for now, so we’re going for the day pass option.  After she falls asleep, they attach a sensor to Jade’s toe that monitors her heart rate and oxygen saturation levels and movement, so if she has a seizure in the night, they’ll come running.  So far that hasn’t happened (and to be honest, the damn machine can get pretty annoying beeping when Jade is restless…) but it is a comfort.  We’re starting to recognize that Jade seems prone to seizure in the morning between waking up and the end of breakfast, as well as in the evening after supper before bed-time; so perhaps fatigue is a trigger or a kind of vulnerable time.  The good part is that if we start seeing a pattern, we can start feeling a little more confident about other times.

I’ve seen Jade have a couple of “mini” seizures, lasting between 5 and 15 seconds since I got here yesterday; I’m going to guess they’d have been stronger if not for the meds.  It can take up to five days for the drug to build up in the system enough to get to “therapeutic levels”.  Although it’s been just over that since she started the anti-seizure drugs, it’s only been three days since the increased dosage.  Since the small seizures aren’t harmful, and not even too distressing now that we’re used to it, we’re just waiting and seeing how things go.

Thanks for your continued support and encouraging messages.  I’ve stolen our modem for the night so Michael has no Internet access at home, but I’m trying to catch up from not having had access since lunchtime yesterday.  I’ve read everyone’s messages and I’ll do my best to respond over the weekend . . . from the comfort of home, yippee!

Cheater’s update: e-mail to Sue

29 May

Hi Sue,
 
Wow, I had no idea you ever came to visit!  Thank you SOOO much for your message — it really is strangely comforting to know that someone has gone through what Jade is going through now (and that his parents went through what we’re going through now!)  Michael was astonished to learn that Garrett had seizures as a child — he’d had no idea.
 
Although in many ways there’s nothing much different today from a few days ago, our energy and optimism is flagging somewhat — just the result of a long week, I guess, and of waiting around for the next step when all we want to see is action.  Jade will be in the hospital until they’re confident that the dose of anti-seizure meds will keep her seizure-free.  Meanwhile we’re waiting to find out what kind of time-frame we’re looking at for the EEG and pediatric neurologist in Vancouver or Edmonton.  I just wish there were doors I could go knock on to hurry things up.  My boss’s wife is a retired nurse, and she’s been trying to help by giving us tips on how to keep the pressure on; it helps to think there might be some small things we can do.
 
Jade’s daycare worker came by for a visit this evening with her daughter and a gift: a little plush dog that barks.  I teared up when I saw her; it was so touching to know how much she cares about Jade.  As soon as Jade saw Cheryl, she made a beeline for her, hopped up into her lap and hugged her without moving for at least five minutes.  Cheryl was trying to show her the puppy and she didn’t react at all — I’ve never seen her not react to a puppy, real or otherwise — but she was just too busy hugging Cheryl.  Cheryl also offered to come spend a few hours with Jade on the weekend to give us a break; how unbelievably sweet is that?

I would love to hear more about your experiences… how long it took for them to make the “epileptic tendencies” diagnosis (which sounds pretty vague to me, but seems to be the way these things go, isn’t it?!) and other things that stand out in your mind about that time.  I’m thinking we should e-mail Garrett, too, and see what he remembers about his seizures.  I wonder if Jade knows at all what’s going on?  Does she remember anything afterward?  Do her muscles get sore?  (Her spasms aren’t violent, so they don’t seem painful, but they do make her very tired.)  I wonder if Jade’s seizures will last for as many years.  If they do, I wonder if she’ll be sympathized with or made fun of at school.  That’s so far down the road, but it’s already on my mind.  And of course there’s that ridiculous and useless and completely persistent question: what the heck did I do wrong?  (I know the answer to that, but it lingers like a bad song in my head.)

Sorry, I’m afraid I’m rambling now… I’m just so grateful to you for writing and letting us know you’ve been there.  And to know everything turned out just fine for Garrett.  Even though it’s what we hear, knowing it and seeing the proof is so comforting.
 
Thanks again for your comment — it truly made our day!
 
Gratefully,
Fawn

Quick update

28 May

Jade and Michael came home from the hospital today, but they’re back there again.  Jade had another seizure right before bedtime, although this one wasn’t nearly as bad as any of the other ones.  We’re guessing that means the anti-seizure meds are working, though we’ll now be upping the dose a bit to try to eliminate them altogether.

On the positive side, it was a beautiful sunny day again in Whitehorse, and Jade and Michael had a great afternoon.  Michael set up our giant tent in the backyard and put Jade’s playpen in there, and she had a fabulously restful nap in the fresh air.  They spent the rest of the afternoon walking the neighbourhood and playing with some kids down the street. 

Also, Michael and I are now a well-oiled machine when it comes to overnight hospital stays.  This time he rode down in the ambulance with Jade, while I packed everything into the car and drove down, because frankly, I’m better at packing.  (Michael, you better not be gloating about pulling a fast one on me!)

And so, the saga continues, I’m afraid.  I promise I’ll blog about something else again one of these days!

I’m pooped.  Off to bed with me.  I sure hope Jade has fallen asleep by now…

This is (a) spinal tap

27 May

I don’t know about you, but to me the words “spinal tap” have a comical air about them, even though I’ve never actually seen the movie people associate the phrase with. However, there’s definitely not much comical about the honest-to-goodness medical procedure.

I asked the doctor why this kind of procedure didn’t require an anesthesiologist, since it’s similar to an epidural. He said that an epidural is much more difficult because the area the doctor has to hit is so much smaller. He told me I was welcome to stay with Jade if I wanted to, but I could also wait outside if that would make me more comfortable. I told him I’d be a lot more uncomfortable outside, and basically promised him I wouldn’t get hysterical.

Since the idea is to put a needle into the person’s spine, and Jade’s yet a bit young to listen to the instructions “don’t move a muscle”, they gave her a dose of Midazolam, a sedative, mixed with Tylenol, which was to take the edge of any discomfort from the needle once everything else had worn off. Midazolam is supposed to take 10 to 15 minutes to work, but when that window had passed, Jade was still wide awake. The doctor ordered another dose. Then another. And then yet another. I was getting agitated about the massive amounts of drugs she was getting, but Jade was just high as a kite, giggling about everything and not looking the least bit sleepy. The doctor said that by the time the last dose was administered, the first dose would have been wearing off because it’s metabolized quickly, but I was still upset about how much of the stuff she got.

Another doctor, an anesthesiologist, came in and they decided to administer an intravenous sedative instead, convenient since she already had the IV thingy (Drat it! What’s it called?) in her arm. She got another dose of Midazolam intravenously, and then a dose of Ketamine. Apparently, Ketamine gives people weird dreams, but Midazolam induces mild amnesia. There might be other reasons for the combination, but that’s what I gleaned from the conversation. Anyway, the important thing is that it worked pretty close to instantly.

They curled Jade up in fetal position to get the spine to open up and the anesthesiologist helped the doctor to mark the spot with a pen. He actually kind of coached the doctor through much of the procedure, which I must say did nothing to calm my nerves. I realize that they don’t get to do these things very often here, and they want to have more people proficient at it, but it didn’t give me any warm fuzzies to realize the doctor hadn’t done this very often before.

The doctor swabbed Jade’s back with tincture of iodine. It ran everywhere; we were even cleaning it out of the folds of her ear afterward. The needle he inserted into her spine was pretty ordinary looking, except it didn’t have a syringe attached, just a little plastic opening. Spinal “tap” really is an apt name for the procedure. I couldn’t help thinking, as he held the collection vials under the opening (and some dripped onto the bed as he was switching between tubes), that it really was like watching sugar water drip from a tapped maple or birch tree. Only a lot more emotional. They all commented on how beautifully clear the cerebrospinal fluid was, I guess the first good indicator that she doesn’t have meningitis.

It took about 45 minutes for the Midazolam/Ketamine to wear off, and Jade was pretty weak for a while afterward. By this time it was about 3 in the afternoon; she’d spent most of the day sleeping. I got the nurse to make me a list of all the drugs Jade had had that day, so I could keep track, and also so that if she ever needs to be sedated again, I can tell them to bugger off when they suggest an oral dose of Midazolam.

Once the procedure was over and everyone was cleaning up, the doctor looked at me and said approvingly, “You did well, Mum!” I chuckled, wondering if he’s ever actually had a panicking parent watching him do a lumbar puncture. But all I said was, “More importantly: you did well.” I’m not sure whether or not he appreciated that.

Seizure update

27 May

I’m at work today and it’s lunchtime. I would be at the hospital visiting with Jade and Michael, but I called first to see if they needed anything and it turns out Jade is napping right now. So instead of disturbing her sleep, I’m taking a few minutes to update you on her situation. Bear with me, it’s a bit long because I’m including lots of details.

First off, thanks so much for all the supportive comments, e-mails, and phone calls. It’s so heartwarming to know you’re all thinking of her! Kelly and Nita and dropped off a container of butternut squash soup (yum!) and Alpine Bakery bread (double yum!) last night, so I won’t have to stress out about supper when I get home later today. All your good wishes and prayers give me so much strength!

Monday morning, I arrived at the hospital at 8:45; I saw that Jade’s arm was bundled up in a bandage to keep an IV thingy (what’s that part that stays in your arm called?) in place. She was sleeping. I looked at Michael and said, “She had another one, didn’t she?” He nodded.

This one was the longest one yet, but the good part was that the doctor was right there when it started, so he actually observed the seizure. After she’d been in the seizure for about 5 minutes with no signs of recovery, they gave her a dose of Valium. Another 5 minutes passed and she was still convulsing, so they gave her another dose. A few minutes later, it was over. I wonder if the Valium did it, or if she would have finished then anyway.

They decided to do a CT scan. Michael was with her for it and he said when they strapped her to the board, they were going to restrain her arms, but he told them not to. She’s hated having her arms restrained since she was born; she would always struggle to get them out of a swaddle. They let her just relax on the board for a minute or two, and she fell asleep, and the scan went off without a hitch. Apparently, the radiologist was astonished that it had been so easy.

Jade woke up just before 10 a.m., just long enough to get a dose of Clobazam (the anti-seizure medication) mixed in a spoonful of ice cream, and then she fell asleep again.

Early in the afternoon, our wonderful nurse Janice told me that the doctor was coming in to talk to us about doing a lumbar puncture, also known as a spinal tap. Even though they thought it highly unlikely, the specialist in Vancouver recommended testing for meningitis; small children sometimes don’t get all the expected symptoms. I’ll write about the spinal tap procedure in a separate post, so as not to bog this one down with the details.

The hardest part about yesterday was coming to terms with the sheer volume of drugs Jade got pumped into her little system. A list:

  • Valium (5 mg total) during seizure
  • Clobazam 2.5 mg (anti-seizure medication — I think it ended up being 5 total by the end of day)
  • Midazolam 12 mg total by mouth (this was really distressing — details in the spinal tap post)
  • Tylenol (250 mg) to ease pain for spinal tap
  • Medazolam (2 mg) via IV to sedate for spinal tap
  • Ketamine (5 mg) via IV to sedate for spinal tap
  • Amoxicillin for ear infection

Talk about a pharmacopoeia.

I saw Jade this morning before coming in to work; she’d had a terrific night’s sleep (once she fell asleep, which was very late… not surprising given how much time she spent asleep during the day) and was in a great mood after having a hearty breakfast. Michael took advantage of my presence to have a shower. Jade showed me how happy she was by crawling around on the hospital bed; I was impressed at how she’s so quickly learned to be careful with her hand with the IV thingy (gotta ask the nurse about what it’s called!) — it’s not so comfortable when you try to crawl on it.

It looks like Jade will be in the hospital for at least one more night, and she’ll be staying on the anti-seizure meds for at least a week. After that, we foresee taking her off and watching to see how she does. Hypocritically, after having such a hard time watching her have all those drugs yesterday, I’m now worried about taking her off the anti-seizure meds.

As for the trip to Vancouver, it doesn’t look like it will be happening anytime really soon. Dr. Avery explained that because “seizure disorders” are pretty common, it’s difficult to get a neurologist riled up about it. Also, having the work-up by the neurologist is unlikely to change the course of treatment (which is to give anti-seizure medication). So it’s not really considered urgent.

I guess we can say that Jade officially has epilepsy. Apparently, whenever someone has a two or more seizures not associated with fever, it’s called epilepsy. That’s about as scientific as the definition for colic.

The good new is, seizures aren’t inherently risky, unless they go on for a long time (meaning getting up around 30 minutes) or if the victim can’t breathe. Or if they’re in a dangerous situation, of course, such as driving, or riding a bike, or on the stairs, or in the pool… (Given this, we wondered if the Valium was really necessary yesterday morning…) The other good news is that it’s common for kids with epilepsy to just, well, grow out of it.

Michael and I are doing pretty well. We make a good team, and I’m grateful that he can be at the hospital. He told me people keep commenting on how calm he is, but he says he doesn’t necessarily feel that calm. I could really see it when I was visiting them last night after Big Band practice. Michael was in the hall, waiting for Jade to fall asleep. Whenever she got quiet or if he heard a thump from the room, he’d rush over to the crack in the door to check on her, worried another seizure was starting. Only to hear her start chattering about something, telling him she was just fine and not sleepy at all.

For my part, I had a couple of good cries at the hospital yesterday, but I am feeling relatively calm. I can’t explain it, but after all we’ve been through this weekend, I just believe that we’re all going to be okay.