If you haven’t got anything nice to say…

18 Mar

Blog, I’ve been ignoring you, I admit it.  It’s not you, it’s me, and I’m sorry.  It’s just that I haven’t had much good to say this past week, and I was really hoping things would pick up so that I could tell you something funny or inspiring or uplifting.  But the truth is, things haven’t been all that great.

To get to the point, Jade’s seizure situation has been steadily deteriorating all week and by yesterday, Michael and I were getting pretty scared.  Jade had very few “lucid” times yesterday; most of the day we were seeing seizure after seizure and by evening she’d gotten to the point where there was almost no break for several hours.  I couldn’t tell if she was having absence seizures with twitches in between, or if she was actually having myoclonic jerks; absence seizures aren’t considered dangerous, but constant myoclonics should be treated with emergency medication to prevent brain damage.  I tried calling the neuro nurse we’d talked to earier in the day, but she was gone for the day.  I was scared to let her sleep alone in her room, all the way at the other end of the house.  I left her door wide open, we had the monitor on full blast, and I wouldn’t let Michael keep the fan on (not that he argued). 

This morning we reached a neuro nurse at BC Kids and, in consultation with one of the epileptologists, they determined that Jade was probably in non-convulsive status epilepticus, that was should give her a dose of Valium to break the cycle, and that we should get her to the hospital.  Ideally, they would have liked to bring Jade in to the hospital in Vancouver, but they figured the hospital here could do some initial bloodwork and then determine whether she could be managed here or have her medevaced.

I dropped Michael and Jade off at the hospital at around 9 a.m., rushed home to make some meals and snacks for Jade, trying to get back there before her 10 a.m. snack-time, but not knowing if I needed to pack enough to last several meals in case of a medevac.  My neighbour Joanne came over so that Halia wouldn’t have to stay wailing in her carseat while I weighed and measured and fretted about what meals Jade would eat.  I got back to the hospital at 10:30.  By 11:45, we were leaving the hospital and rushing home to pack so that Michael and Jade could make the 2:00 flight to Vancouver.  They decided Jade should be seen in person by a neurologist, but she’d perked up enough that she could go on a regular flight rather than a medevac.

More panic ensued as Michael tried to feed Jade lunch and finish packing the bags we’d partially packed in the morning, while I frantically packed more food for Jade, not knowing whether they were going to be staying in the hospital or out, whether the hospital could provide Jade’s food (and would we trust it?).  Poor Halia had to wail in the carseat while we all ran around, Jade had a drop seizure and hit her head and starting wailing, phones were ringing with travel arrangements being made… it was a madhouse.

Honestly, I’m getting a little carried away here.  I really only came over to Cathy’s house to do a quick update that Jade and Michael are back in Vancouver and that we really don’t know why she’s been doing so poorly.  I was going to touch on some theories, but I don’t think I have the brain power to sort through what I should mention and what is just bewildering unnecessary detail.

Last I heard (at 7:30) Michael and Jade were sitting in Emergency at the Children’s Hospital, still waiting (two-and-a-half hours later) to go through the official protocol of being seen by an emergency doctor before being allowed to see a neurologist.  Happily, Jade had perked up a bit more.  I phoned the neurologist-on-call to see if I could expedite things, but she had already arrived at the hospital and was just about to go see Jade.

Michael took our modem with him, so I have no Internet at home.  Cathy was kind of enough to sit at my house with sleeping Halia while I came over to update you, blog, since that’s the best way to keep family in the loop these days.  I’m sorry I forgot to bring my eloquence with me (I think I left it in my other pants) but my brain isn’t so very together at the moment.

I”m okay, though.  I’m okay.

28 Responses to “If you haven’t got anything nice to say…”

  1. Mr Lady March 18, 2009 at 10:27 pm #

    God, I just can’t even fathom how you stay in one piece. Thinking of you, honey.

  2. Kara March 18, 2009 at 11:53 pm #

    Oh gosh Fawn! We are sending all of our good thoughts and prayers your way!

  3. Marian March 19, 2009 at 2:19 am #

    It was good to talk to you yesterday…but sending even more love and hugs today.
    We’re always thinking about you.

  4. Nancy March 19, 2009 at 3:09 am #

    Fawn: I’m sorry to read about Jade being in the hospital and having so many seizures again. I send my prayers to all of you!

  5. natasha the exile on Mom Street March 19, 2009 at 3:35 am #

    That’s just damn unfair for all of you Fawn. I don’t know how you manage it with such grace, and I assure you, YOU DO.

    I am praying for you, Michael, Jade and Halia.

  6. Kellyn March 19, 2009 at 3:38 am #

    Thinking of you!

  7. Adventures In Babywearing March 19, 2009 at 4:37 am #

    Oh Fawn, I hope all is ok!


  8. Lindsay March 19, 2009 at 5:38 am #

    I’ve just read your blog this morning. I didn’t realize how bad she had gotten. I’ll be thinking about you contstantly. Thanks for the update. Lots of love and well wishes. xoxoxoxoxo

  9. xtina March 19, 2009 at 7:34 am #

    Thinking of the four of you and sending good thoughts and prayers from Ottawa!

  10. Jenny March 19, 2009 at 7:47 am #

    So sorry to hear this! It’s seems the hard times are that much worse after you’ve had the hope of improvement! Everytime we have a good day I worry she’ll have to “make up for it” another time! It’s so scarey to not know what’s happening!

  11. Andrea March 19, 2009 at 8:43 am #

    My heart hurts reading this. It sounded like she was getting better.

    My heart goes out to you and the family. I wish you all the best.

    You’re amazing for going through all this. Not that you have a choice, but still.

    Thanks for the update.

  12. Jamie March 19, 2009 at 8:50 am #

    I am so sorry you and your family are going through this! My thoughts are with you guys right now!

  13. Carolyn on Haida Gwaii March 19, 2009 at 9:00 am #

    My thoughts and prayers are with you all as you go through your journey.
    Blessings and smiles

  14. IndyComp0T1 March 19, 2009 at 9:16 am #

    Oh Fawn, I’m so sorry to hear about Jade! I totally teared up as I read your post. I really hope that the trip to Vancouver goes well. I’m keeping my fingers crossed!!!

  15. Malke Rosenfeld March 19, 2009 at 10:13 am #

    I’m Abigail’s aunt and found your blog through my brother Mike’s blog about her ketogenic diet. I just want to let you know how sorry I am to hear about Jade’s current issue. I’m not sure what else to say other than I’ll be thinking about your family and hoping for the best!

  16. Sarah March 19, 2009 at 10:50 am #

    Hopes and prayers and best thoughts for all of you.

  17. Janet March 19, 2009 at 12:49 pm #

    I’m so very sorry Fawn. Please let me know if I can help with babysitting or anything else over the next little while. I’d be happy to watch Halia…even if just to give you a chance to go for a walk and have a good cry or scream or anything else that you need to do. I’m free any evening this week.

  18. Ripplebliss March 19, 2009 at 3:44 pm #

    You never, ever need to apologize for sounding frazzled or less than eloquent – or for latent periods between blog posts. Everyone who knows you knows that you work nonstop to keep your family running and to take care of Halia and Jade. You are an inspiration to begin with! Hearing from you is a bonus – and gives me the chance to let you know we are thinking about all of you, especially your little Jade.

  19. Bubblybunny March 19, 2009 at 6:42 pm #

    I am sorry to hear Jade isn’t doing so well. I hope the doctors in BC can give you and Michael the answers you see. My thoughts are with you and your family. I hope Jade comes home to you soon, happy and healthy.

    Take care!! And please keep us posted on Jade’s progress.

  20. Tine March 20, 2009 at 3:53 am #

    Oh, no – that’s bad news 😦 !! I’m SO sorry !!

    Of course, I’m keeping my fingers crossed, & thinking of you guys, too !!

    Lots of love !!

    ♥ ♥ ♥

  21. Barbara March 20, 2009 at 4:07 am #

    Hopefully, prayers are in the ‘better late than never’ category. Sending, sending, sending.

  22. Asheya March 20, 2009 at 3:17 pm #

    So stressful! I hope they got some things figured out, and that Jade is doing better now.

  23. Indigo March 20, 2009 at 7:40 pm #

    Don’t apologize, you have so much on your plate its a wonder you are as sane and whole as you are (and YOU are!!). Mind in pants, love the thought. Praying and hoping and fingers crossed and legs too for all four of you.

  24. Darcy March 21, 2009 at 7:33 am #

    Wow. This is one of the few times I find myself lost for words. I think it takes incredibly strong people to deal with something like this. All the best. Take care.

  25. Sarah March 21, 2009 at 8:34 pm #

    You guys are amazing – you will make it through this difficult time. (And look back later and ask yourself how you did it!)
    I’ve had the same experience waiting in the emergency room in Vancouver just to get admitted, even though everything’s set up already and there’s no reason whatsoever to be waiting hours in the emergency room. Soo frustrating!
    All the best to you all,
    Sarah (& Elis)

  26. Nancy March 24, 2009 at 6:51 pm #

    I feel like I’m “cheating” on your husband by coming over to your side:D

    Just wanted to say I hope you and the girls and Michael are rested and feeling more peaceful. And, that I hope Jade is getting healthier and healthier….


  1. An update, already « Fawnahareo’s Place - April 1, 2009

    […] up until yesterday, I could have simply re-written the “if you haven’t got anything nice to say” post, I was feeling so crummy.  Michael and Jade got back on Wednesday, and Jade had been […]

  2. Fast « Fawnahareo’s Place - May 15, 2009

    […] of the suggestions we got from the neurologist when Jade had to go to Vancouver in March was to fast her periodically, perhaps once every month or two, just for a day.  Because of the […]

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