Tag Archives: illness

Fly-by post

7 Jun

I bawled my eyes out when I was writing to my godparents last night.  Then I bawled my eyes out this morning when Marian called and told me it was much too difficult for me to stay home and that I ought to go to Vancouver to be with Michael and Jade and that she and Jim would pay for me to get down there.  So I am, in about 8 hours from now.

In the meantime, my godparents generously swooped in and brought food supplies to Michael and Jade (plus took them out of the hospital to a nice restaurant) and a friend in Ottawa phoned her parents in Vancouver, who also brought food, and another friend in Toronto somehow made arrangements via the Internet to have some food delivered to Michael and Jade on Monday.  On my end, neighbours have agreed to look after the pets, drive me to the airport, keep me company, feed me… Unbelievable!  I’m overwhelmed with gratitude.

Oh, and I just noticed that Michael made a third blog post today, and he tells it much better than I do.  While you’re at it, he talks about the tests Jade will have to have this week, and how she’s adapted to hospital life.

It’s after midnight and I need sleep.  I’ll update again when I can.

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…

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.

Recurrence

25 May

I’m home from yet another trip to the hospital.  Two, actually.  It was a beautiful day in Whitehorse today, sunny and around 26°C, even hotter in the sun.  All three of us got mild sunburns, not wanting to waste a minute of such a beautiful day.  I got great pictures of Jade in her bathing suit, playing in a huge Rubbermaid container that we repurposed as a wading pool.  It’s even ending beautifully, with a spectacular sunset of purples, pinks, oranges, and incredible cloud formations to distract me as I drove home.

The day started early again, but Jade was in good spirits.  She had a brief episode of involuntary arm twitching while Michael was chatting with a neighbour, but we weren’t super worried about it — just kinda something to add to the list for tomorrow morning’s follow-up doctor’s appointment, hoping it would speed up the request for the EEG etc. appointments in Vancouver.

Michael worked hard in the garden all afternoon.  He’s emptying all the soil out of the garden beds and the greenhouse, in anticipation of tearing it all down to build a bigger, better shed/greenhouse combo.  He kept working while Jade and I had leftovers for supper.  We were just finishing up and Jade was kneeling on her chair, holding her little glass of milk with two hands.  I was encouraging her to finish it, when her arms spasmed, spilling milk on the table.  She looked a little confused and then tried to bring the glass to her lips again.  Again, her arms shot out.  She tried a third time, and I gently took the glass from her as her eyes started rolling back.  I picked her up and cradled her as she went into another full seizure.

I knocked on a window to grab Michael’s attention and started hunting for a phone.  We’ve got 4 damned handsets, so you’d think there’d always be one handy, but I couldn’t find any of them and I was trying to watch Jade at the same time, to make sure she was breathing, holding her tilted to one side so that she wouldn’t choke on her own saliva.

Michael came in and found the phone and called 911 again.  They weren’t quite as quick as they were on Friday, apparently because Michael told the dispatcher she was breathing.  He had to repeat certain information a couple of times and sounded frustrated.  Once he got off the phone, I handed Jade off so that I could try to re-pack the bags we had just unpacked earlier (well, mostly) in the day.

To make a long story short, Jade has been re-admitted to the hospital and is going on anti-seizure medication.  I can’t remember the name of it, and the closest name I came up with apparently shouldn’t be used for kids under 18, but it was recommended by the pediatric neurologist on-call in Vancouver, so either I’m remembering wrong, or the wiki is wrong, or there’s just something seriously wrong and I’m trying not to get worked up into a lather.  (Aside: I wonder how many calls the on-call pediatric neurologist gets a week; talk about specialization.)

Michael’s cancelling his trip to Nahanni so that he can stay home with Jade.  Well, I use the term “home” loosely.  We don’t know how long she’ll be in hospital.  They’ll be monitoring the level of the drug in her blood-stream to ensure she gets just the right amount, so she won’t be released until that’s been fine-tuned and they’re satisfied that the drug is doing it’s job.  With the tiny amount I’ve now read about anti-seizure medication (not to mention Granny’s horrible experiences with the drugs) I’m anxious for us to get to Vancouver ASAP so we know for sure whether continuing with them is a good idea.

I’m exhausted, but I just have to add that I’m so grateful for all the support and love we’ve been feeling.  Tim’s right there for us, of course.  Cathy across the street made a point of coming over to talk when I got home from the hospital (the first time, I cam home to pack snacks and overnight things for Michael, since in the first rush with the ambulance, a few things were forgotten).  Then Tom, from next-door to Cathy because I’d been talking to his wife earlier in the day and he wanted to offer whatever help he could offer.  My friend James called from Saskatoon when he saw my Facebook status change.  And one of the pediatric nurses, a good friend of Marusia’s who just moved to Whitehorse from Vancouver suprised us at Emerg.  We didn’t evern realize she’d moved to Whitehorse, so we didn’t expect to see her there, but she said as soon as she heard the call for Jade’s chart, she had to be the one to bring it down to see if we were okay.  That might have made no sense to some of you, but I’m just too tired to proofread right now.  (Does “proofread” always look as weird to you as it does to me?)

I’m going to stick a load of Jade’s laundry in the wash now and then sink into bed.  Michael’s not likely to sleep much tonight, so I’m planning to relieve him early in the morning so that he can come home and sleep a few hours.  What a way to end such a beautiful day.

Together again

24 May

Michael had a long night at the hospital (he was blogging about it at 3 a.m.) and I had a long night at home, having a hard time staying asleep.  My best couple of hours were after my alarm clock went off at 7 a.m. (forgot to turn it off) so I was actually rested when the phone rang at 9.  It was a neighbour calling to check up on us, as another neighbour had seen the ambulance at our place yesterday morning.  (Good God, was it really just yesterday morning?!)

Anyway, we all got home just before lunch today, apparently no worse for wear, although we were all tired.  Jade delighted in being outside and didn’t want to come in to have lunch, so we ate it on blankets outside, basking in sunshine and +25-degree weather.

We still don’t know exactly what happened; we’ve heard a few theories, although it seems most likely that it was somehow related to the ear infection.  Jade will be referred for an EEG in Vancouver, as well as a follow-up with a pediatric neurologist, and some third appointment that I can’t remember right now.  Depending on the scheduling, it could take as long as three months to actually get to Vancouver for these appointments; of course, we’d rather see them done sooner rather than later, but in the meantime, Jade seems so normal again, I don’t think it will take us long to get on with normal life, either.

Despite the stress and the fear, I am so grateful for a number of things.  First off, that Michael was home and right there to take charge when the seizure happened — he’s definitely the man you want to have around when a crisis happens.  I will say that I think I’m generally pretty good in a crisis, myself, but it sure was great to have him here, especially with all the shuttling around we did to get stuff from home to the hospital.  He was originally supposed to be leaving for Nahanni Butte on Wednesday, but had rescheduled his departure for Friday evening.  After the seizure (and finding out the highway he was going to be driving on had been washed out in two places) he made arrangements to fly out on Monday, instead. 

Secondly, I’m glad that I went and got Jade and put her in bed with us; sometimes I just let her stay in her bed, crying or not, until it’s really time to get up.  She could have seizured all alone in her bed and I might never have known; I might have wondered when I did go get her why she was so disoriented and cranky. 

I’m grateful to the paramedics, who were so professional and reassuring.  I’m not given to panic and it made me smile inside when they were telling me “you did exactly the right thing” as if to soothe me; their kindness and empathy was  soothing.  Plus they let Jade keep the teddy bear from the ambulance — how sweet is that?

I’m grateful to Dr. Buchanan, who has an almost-two-year-old of her own.  She befriended Jade right away, asked lots of questions, took plenty of time to discuss everything with us.  She is so easy to relate to, I bet I’d enjoy chatting with her over a cup of tea, watching the girls play together.

And I’m grateful to all of you for your support and messages of goodwill.  You have no idea how bracing and comforting you’ve been!  I had a look at my stats just before starting this post, and yesterday I officially had the highest number of page views in one day, at 229 views.  I doubt more than one of those views came from the extremely strange search for “why put shoes in the fridge” (yeah, really, why?); I’m betting a few of you were checking in to see how we were doing.

Despite all that, I must say I’d be glad never to have another day like yesterday.  But I guess it’s part and parcel of having kids.  Thank God she makes me laugh every day.

Hug me!

 

A very long day

23 May

I’m now home again, since we decided to have Michael stay at the hospital with Jade.  It seems they actually had a good time together there today, playing out on the patio of the pediatric ward, reading books, watching silly movies, and even getting a nap in.

After finishing work (which I finally managed to make relatively productive) I had the pleasure of going to the insanely busy grocery store to stock up on much-needed supplies; our fridge was all but empty.  By the time I got home, it was 6:00, which is when we usually eat supper.  The kitchen was in an abysmal state, so I tidied up and had sandwiches for supper while cooking up some chicken breasts to turn into snacks for Michael.  He and Jade had been served supper around 5:00, and he knew he was going to be hungry. 

I got Jade’s playpen and some overnight supplies for Michael, then loaded Nanuq into the car, reinstalled the bike rack, and attached Michael’s bicycle.  I got everything lugged up to Jade’s room (on the second floor) around 8:00, only to find that our “very tired girl” wasn’t tired at all.  Michael got out on his bike in the trails around Riverdale so that he could get a little fresh air after being indoors all day.  I napped on the bed in a vain attempt to get Jade to sleep in her playpen.  She played happily in there, alright, but no sleeping.  Apparently, the nurse came in.  I didn’t see her, so I guess I must’ve fallen asleep.  But Jade waved happily at her and said hi.

I was going to leave right after Michael got back around 9:00, but he said I should stick around.  So I did.  Jade was still going strong, in a very good mood.  Finally, I decided to call it quits at 10:15.  I tried to put Jade back into her playpen and she protested loudly.  Michael tells me she fell asleep two minutes after I left.  Apparently, she can’t sleep when I’m around.

Anyway, she’s behaving completely normally, eating well, and charming the pants off everyone, so I’m sure she’ll be home first thing in the morning.  The doctor from Emergency is referring her for an EEG (not sure what that is, and I’m too tired to look it up) in Vancouver, but it likely won’t happen for a month or two.  But we’re assured that it’s unlikely that Jade will have another seizure.  I’m okay to go with that for now.

Please pardon the lack of eloquence.  I am bone-tired, but since Michael and I have been pretty unreachable today, I wanted to make sure the latest news was up.  So don’t worry too much NaiNai and Gran!