Life

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

by Veronica on September 6, 2012

in Life

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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I am so beyond thankful

by Veronica on June 9, 2012

in Life

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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It’s been a little chaotic here.

by Veronica on May 19, 2012

in Life

It’s loud in my house this morning, which I think is more of a statement about my mental state, rather than the relative loudness of my children. Despite hoping really hard that I wouldn’t, I caught Isaac’s stomach bug and spent a fair amount of time Thursday night through to Friday morning actively wishing I was dead.

I curled up around my bucket and was glad for the fact that my children were sleeping, as I threw up and pulled all the muscles in my stomach, chest and throat.

It wasn’t fun.

Recovery yesterday was slow and this morning, I have just braved a single piece of toast in the hope that I can get something other than water cordial to stay down. A cup of tea would be much appreciated, but to be honest, I’m too tired to make it.

In other news:

This.

This is one part of my yard that is now covered in trenches and mud. That trench is not meant to have water in it, by the way. Two days later, we’d hoped that the water might have evaporated, but a quick glance this morning showed that there was actually more water seeping in from the old failing grey water system.

It was meant to be a simple job – dig a trench to put pipes down, so that we can put a toilet inside. Unfortunately the toilet pipes intersect with the very old earthenware grey water pipes and we were forced to dig those up and replace them as well.

Only to discover that the grey water system at the moment is not working at all, forcing us to replace it entirely.

A “small” job suddenly had Nathan and I playing juggle the budget and working out how exactly we were meant to afford the extra work. Luckily our contractor is a guy who has been working for my family for years and he’ll be happy to be paid in installments.

Needless to say, this week has been a little chaotic.

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Watching the weather come in.

by Veronica on April 29, 2012

in Life

Watching the weather come in

Also seen while outside freezing my nipples off: a murmuration of starlings.

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