Sleepless Nights

Author: Veronica

  • Gate leave

    After an MRI and a two hour video EEG today, we are none the wiser as to why Evelyn appears to be having seizures, or “episodes”.

    With that knowledge, we were granted gate leave in order to come home for the weekend. We need to follow up on Monday, when a new plan will be made, depending on what the Melbourne Children’s Hospital has to say. Unfortunately, they probably won’t have reviewed her information until later in the week, so backwards and forwards we go.

    There is another attempt at a lumbar puncture in her future and goodness knows what else. I’ve just spent the last 20 minutes hashing together video footage of the episodes to send to the doctors, so that they’ve got more knowledge to work with.

    She’s still having episodes on a regular basis, with the routine seeming to be that they’re more common shortly after a feed and as she falls asleep. Which is a good deal of the time, as she is still sleeping 22+ hours a day.

    Strange baby.

    No seizure activity was seen on her EEG, despite her having numerous twitchy episodes during the test – which had the benefit of allowing me to demonstrate her particular brand of limp and floppy to the technician performing it.

    In any case, we have no idea what is going on and it seems, neither do her doctors.

    Yet.

  • What’s worse than one lumbar puncture? TWO OF THEM!

    Oh internet, I am shattered after this afternoon. They recannulated Evelyn in order to take lots of blood, only to have the line kink and require lots of fiddling with.

    Eventually they got the line working again (I’ll point out here that it was nothing anyone did wrong, just a thing that happens), while Evelyn cried, loudly. Sucrose, normally the liquid saviour of the gods – or more accurately the saviour of tiny babies undergoing painful procedures, helped, but it wasn’t as good as previous times.

    Eventually it was done though and thus began the lumbar puncture ordeal.

    The first needle got us nothing. The second needle got us blood. The third try got us mixed spinal fluid and blood, but not enough to be useful for testing.

    The doctor was so apologetic, but she will have to have another lumbar puncture tomorrow.

    It wasn’t easy to watch. She screamed so hard that she turned blue. Then once it was over, she was pale and miserable, until I managed to feed her. She sweated everywhere and gave herself a heat rash.

    I was fine during it, but I’m not sure whether I want to cry or throw up more now.

    And we have to do it all again tomorrow.

    In the meantime, our Paeds (who are a great team, by the way) continue to consult with the Royal Melbourne Children’s Hospital, and I have to try and film more seizure activity.

    It can only get better, right?

  • Apparently, my baby sleeps too much. Don’t you wish you had my problems?

    Ah Internet, so much has happened since I last wrote here. We brought Evelyn into emergency yesterday morning, knowing that the Paeds team had been appraised of her condition and were expecting her arrival. By 5pm she had been transferred up to the high dependency paediatric ward, for observation and testing.

    So far she’s had lots of blood drawn and an EEG, which have all come back normal.

    The concerning thing at this stage is how much she is sleeping. I guess she’s averaging around 22 hours of sleep a day, which is ridiculous when you consider this blog is called Sleepless Nights.

    Now we have to start testing for the really rare things that can cause seizures and sleepiness. She will have an MRI in the next day or so, as well as a lumbar puncture and another whole lot bloods. There will be testing for chromosomal abnormalities, as well as for rare metabolic disorders.

    We’ve got hoof beats and we’re now looking for zebras.

    She’ll be in the paediatric ward for another few days, while her doctors here liase with the paediatric neurologists in Melbourne to get their opinion on a course of action for Evelyn, regarding possible medications and treatment.

    Until then, we’re waiting. Waiting for tests, for results, for Evelyn to stop sleeping quite so much and stop twitching.

    Waiting.

  • Things are moving along. Slowly, but you can’t hurry the system. **UPDATED**

    It was a long and stressful weekend, with Evelyn getting more and more twitchy and tired, and me getting more and more stressed. My house is spotless, so I guess Nathan was stressed too (he cleans when he’s stressed).

    In any case, we sent Amy to school this morning and settled down to wait for the doctors to organise things. Of course, then Amy got sick and needed to come home. It was her first day back in over a week. Sigh,

    I don’t do waiting well, for the record. I get grumpy and I can’t settle. Waiting is not my forte.

    Our GP finally managed to get in contact with the Paed at the hospital, only to discover she was actually in on an emergency surgery and unable to organise anything right that minute. The GP will hopefully speak to her in a few hours, to work out when they can see Evelyn. Failing that, he’ll talk to one of her collegues, to organise a plan that way.

    The GP is hoping we can be seen tonight or tomorrow, without having to go through the Emergency Department. Which is great news, as Evelyn has even more episodes and everyone’s stress levels rise.

    So, that’s basically it. Ev is still seizing regularly and sleeping pretty constantly. The hospital wheels are in motion and hopefully I’ll have an update soon that involves more information.

    Until then, we wait. All together.

    —

    **UPDATED**

    Our GP has spoken to the Paeds team and the plan at this stage is to take Evelyn into Emergency first thing tomorrow morning (Tuesday), along with a letter from him. That way she can be seen by the paediatric team and tests can be started.

    Wish us luck.

  • My blog turned five and I can’t bring myself to care

    My blog turned five last week. Five years I’ve been writing here, with all that that entails. I’ve seen the rise of the Mummyblogger happen, and the rise of branded messages too. Things have changed an awful lot since I started and that’s neither good or bad. It’s just change.

    It’s different now, this blogging space – MY blogging space is different. The thing about my blog turning five is that I actually care less about traffic now. Growth? That’s something my children are doing – my blog doesn’t have to grow a certain amount per month to keep me happy. Sure, I’d love my blog to be successful and highly trafficked, but it just seems like so much WORK, you know?

    Evelyn is sick you guys, and that also changes my perspective. Any time I’m spending on the Internet is time that I’m trying to distract myself. Or time that I’m Googling seizures in newborns. (Don’t Google seizures in newborns if your baby is having seizures.)

    Far be it for me to tell anyone what they can and can’t do with their own blog, but I am missing the stories. I am missing strongly held opinions, which seem to have been lost in the wishy washy of trying to keep everyone happy and not upset potential sponsers.

    I don’t even know what I’m trying to say here. I want the Internet to distract me and frankly, the things that used to work no longer do. Twitter seems to be a mess of brand messages and self promotion, with no room for conversation and the sycophants rule.

    My baby is having seizures and the Internet just seems ridiculous right now. How much of this space matters? Is being famous on the Internet even worth it? Why are we letting other people dictate how we ought to use our own spaces?

    My blog turned five and I didn’t even notice, because I was too busy actually living my life.

    I find myself caring less and less about what everyone else thinks, and just wanting to tell my stories.

    When I read back through this blog, in ten years, am I going to get nolstalgic for the giveaways? Or for the stories I tell about my children?

    Evelyn was born and I blogged her stay in NICU, knowing that it would bore people, because I needed to remember it. Now she’s having seizures and I am blogging those, so that I have something to remind me in 10 years (when things will be so very different) of just how terrifying it is to hold my newborn daughter while she twitches and seizes.

    It’s funny how things change.