Sleepless Nights

Author: Veronica

  • Still waiting. I haven’t stabbed anyone though, so BONUS. UPDATED***

    I would just like to point out that I haven’t stabbed anyone today. Nor have I shouted (except once, when Amy was incessantly pulling on my pants to get my attention instead of USING HER WORDS and that, my friends, is justified shouting), or thrown any crockery, or had a tantrum.

    I mean, considering the circumstances, I am being VERY CONTROLLED in the face of extreme stress.

    If you’ve guessed that today is the day for Getting Shit Organised, you’d be right. Unfortunately it seems that Evie’s medical teams are all busy with other patients and emergencies and yada yada and so far, no one has returned my calls.

    My twitching, it knows no bounds. Neither does Evie’s twitching, but hers is entirely different.

    On top of her regular seizures, it has come to my attention that I just don’t think she can see anymore. Except for bright lights – I know she can see bright lights, they are the only thing she responds to visually.

    The last time she smiled at me, properly, was a few days before we noticed her seizures. No smiles since. She doesn’t look at my face, she doesn’t track with her eyes, she doesn’t follow our movement around the house. All things that she was doing prior to the seizure activity. Now, nothing. She also doesn’t blink if you snap your fingers in her face, or flick your fingers at her eyes.

    Nor did she blink when Isaac nearly poked her in the eye.

    I sat down in front of her yesterday and tried to catch her gaze. It wasn’t until I spoke to her that she responded, by jumping out of her skin and looking offended.

    There is something called Cortical Visual Impairment which can go hand in hand with seizures.

    (And something even more terrifying that causes seizures and CVI together, along with a few other markers Evie has that we’re waiting on the test results for, but we’re not thinking about that possibility.)

    I need my medical teams to call me back so that I can announce to them that Evie isn’t seeing things anymore. So that we can get things moving.

    Instead I am wandering around the house, unable to settle, waiting for phone calls.

    [I know my medical team is very busy with an entire ward of paediatric patients, so I’m not terribly grumpy that they haven’t called yet. I’ll ring again in a few hours and see if I can catch them them. Our main Paed (working hand in hand with the hospital) has a full list of patients this morning too, so he’s busy as well. I’m just impatient and grumpy. Also, worried.]

     

    UPDATE: Spoke to our Paed. We’ve been told to take Evelyn back to Emergency. Wish us luck.

  • I can’t help but feel that R U Okay Day being today is some sort of twisted irony

    It’s R U Okay day today and of course I’m not okay.

    Because, this:

    She’s absent for the first 40 seconds (notice the lack of blinking?) before the crazy eye movements start.

    I’m not okay. My new normal involves holding my baby while she has seizures. It involves watching her for a lot of the day to make sure that she doesn’t choke when she vomits coming out of it (about 20% of the time). It is giving her supplements in the hope that it’s a deficiency causing her to seize (so far, no luck, but her doctor is organising for her to start a new supplement soon). It’s ringing the hospital to chase up what is happening with her test results and the specialists involved.

    For the record, the Royal Children’s Hospital hasn’t gotten back to our team yet and I am resisting the urge to shout, because they’re so busy that one more patient is just a patient, but for me, she’s my BABY and I want answers yesterday.

    Our new normal is going to be hospitals and specialists and watching the clock during a seizure to make sure that we don’t have to ring an ambulance.

    It’s not knowing what is happening, because half of her tests haven’t come back yet.

    Normal is knowing how to administer sucrose during blood draws and watching the bruises show on her skin later. It’s knowing that I won’t pass out during procedures, so they let me stay in the room to rub her head. Normal is so far from normal that I don’t even know what I’m doing, as I spend the days with Evelyn asleep on my chest because all she does is sleep and all she wants is holding.

    Over two weeks into regular seizures, her body is getting tired. She’s still sleeping nearly constantly and her feeding is starting to suffer. We’re watching her closely to make sure she doesn’t go downhill fast, but it’s taking a toll on everyone.

    I am not okay, because I don’t know that it’s ever okay to have to watch your baby have a seizure and to know that all you can do is hold her through it and clean her up when she gags at the end and loses half of her feed.

    It’s going to be a few more weeks until the last of her tests start to come back and we’re in a holding pattern until we know what they show.

    So am I okay?

    No. No I am not.

    And that is okay, because in this situation, it is perfectly fine to be not okay.

    Are you okay?

     

  • I don’t do well with waiting

    You all know that I don’t do well with waiting. I’m sure I’ve told you all often enough, but here I sit again, waiting and hating it.

    Tomorrow we should end up with a Plan. Tomorrow, everything is either going to be infinitely easier, or infinitely harder – we don’t know yet. I feel a bit like Schrodinger’s cat actually.

    Evelyn’s seizures have been getting more intense, lasting longer and she’s added in a head wobble/bob to the movements that she does. Today she’s been too tired to feed properly, but too hungry to sleep, leaving her cat napping, grizzling and feeding intermittently. She still sucks well, but she’s resting more during a feed and not lasting as long at the breast. I think she’s probably fed every hour today, rather than every three hours that was the norm a few weeks ago. Luckily my supply is so good that for the most part, all she needs to do is lay there and swallow.

    I guess that was my big worry, that the seizures would start to tire her out, leading to a trickle on effect.

    It’s going to take a few weeks for the rest of her test results to come back, the spinal fluid for example needed to go to three different places for testing.

    In the meantime we wait for the Plan.

  • 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.]