Evelyn

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.

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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.]

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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.

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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.

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**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.

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