Sleepless Nights

Author: Veronica

  • Home. Again. Not sure for how long.

    Evelyn is home from hospital again, while we wait for tests to come back and for the paediatric epileptologist to read her MRI and EEGs. We won’t know anything much until Thursday, we don’t think.

    Evelyn continues to seize and twitch and sleep, and I continue to sit and watch her and worry.

    The doctors have started Evelyn on Pyridoxine, which is a form of Vitamin B6. A deficiency can cause seizures and while it’s quite rare for breastfed babies of non-vegan mothers to be deficient (like, broken chromosome rare), it’s an easy thing to trial while we wait for results. Extra in her system isn’t going to harm her in the slightest, and so we’ve got nothing to lose.

    We’re waiting on metabolic tests to come back, as well as tests to look for inborn errors of metabolism. The lumbar puncture on Monday was successful on the third try and much less traumatic for everybody. It did take a few goes to get a cannula in to draw blood though and she’s a bit bruised and hole poked today.

    It’s limbo really, this space between tests started, specialists called in and answers found. However, it feels like we’ve got a good plan and I know we’ve got a good team working on Evie’s problems.

    Nothing much has changed, really.

    But tonight, I get to have a long hot shower and sleep in my own bed. My family is all together under one roof and at this point, that’s enough.

    Thursday, here we come.

  • It’s going to be a big week.

    I took the dressing off Evie’s back this morning, in preparation for a bath. Looking at the hole where someone stuck a needle into my baby’s spine – it wasn’t the smartest thing I’ve done. I pulled her singlet back down, zipped up her suit and held her close while I tried really hard not to think about the fact that they have to try that again.

    We’ve had a good weekend, laid back and lazy. Amy and Isaac have been terribly naughty, a normal response to me coming home from somewhere. It’s how we know things are back to normal. Well, sort of.

    I bathed my baby, washing the hospital sweat and dried blood off of her, and she slept and twitched and slept some more. We snuggled and for a while, things were okay.

    Tomorrow, we take her back to the hospital, to hopefully find out what the plan in. We’re waiting for the teams at Melbourne to decide what they want to do with her, but that won’t be until mid-week.

    It’s all up in the air and I don’t deal well with that.

    In the meantime, Nathan and I have spent the weekend researching babies and seizures and everything else we can find, only to discover that not much is actually out there in the way of information about babies with focal seizures. We did discover that it’s possible her brain is just too tiny to show seizures on the EEG however, and we’ll go in tomorrow with this information.

    Wish us luck Internet. It’s going to be a big week.

    In the meantime, Evelyn is imitating a gingerbread man. Or a butterfly – depending on what member of my family you ask.

    [Swaddle from Love To Dream, who sent it to me obligation free. It’s pretty cool and Ev likes it, so I thought I’d mention it in case anyone needs a swaddle for a baby. Soft, too.]

  • 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.