Life

Last night, Evie was admitted to the paediatric ward again. She was showing no blink reflexes in Emergency yesterday evening and they were “very concerned”. We’d been sped through triage because she was having seizures as they triaged her and within five minutes of being seen by a nurse, we were in a bed in emergency. Shortest wait time ever.

You kind of expect your baby to blink when bright lights are shone in their eyes; unfortunately Evie didn’t flinch. I knew her vision was playing up and that she couldn’t see faces or toys anymore, but at home, lights were something she’d still react to.

Her vision has been changeable though, so who knows what will happen. We should have an appointment with an opthamologist today to try and work out what is going on.

In the meantime, she’s just had her first dose of anti-convulsants (phenobarbital), which has rendered her comatose. Little did I know that my first venture into the world of barbiturates would be with me drugging my baby. (Okay, so the nurse drugged my baby, but semantics.)

In any case, she’s had a few seizures this morning, a cluster at 2am (that I forwent recording in favour of trying to get her to sleep instead) and according to my shiny official piece of recording paper, over 30 seizures between 8pm and 11.15pm (three separate clusters). We were so lucky though, two doctors were in talking to me when she began one cluster and they got to witness them first hand.

I think that’s about all for this early in the morning. I’m sure that it will be a very busy day for Miss Evie, while they work to ascertain if she’s gone blind.

Wish us luck.

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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?

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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.

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This:

This might not look like anything special to you. In fact, you may be wondering why I’m posting a photo of a very normal toilet. But I am excited.

We’ve lived in this house for the last four years and had an outside toilet the entire time. Finally, we bit the bullet, replaced the entire grey water system, had new trenches dug, put in new piping and got a toilet put inside. See here for photos.

It was an absolutely huge job and half of my front yard remains nothing but clay and mud (we’re hopeful we can put grass seeds in soon) but it’s DONE!

My friend, the ever lovely Lucy, dropped her husband in it and suggested that he could put our toilet in for mates rates. I am beyond grateful to them both, not only Tom for taking the time out to plumb everything in and make it work, but for Lucy letting us borrow him and being so generous with her friendship and support. Also, Mum for offering to make the ceramics to pay Lucy and Tom with.

Sometimes, the people you meet are simply amazing. They really really are.

It’s been a busy few weeks, but it’s all done now and guess what Internet – I can pee inside. No more am I freezing myself at 3am because the baby bounced on my bladder.

So beyond thankful.

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