Three Ring Circus

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The IVIG poster girl.

You know what makes me crazy?
Aside from driving for two and a bit hours like a mad woman to the hospital, so we can sit and wait for an hour and a bit for our half hour slot?
It’s a doctor who doesn’t know what we have been through and who looks the pred child up […]

Comments (27)

Love sick

She wanders out to the kitchen, a look of urgency on her face.
“You take me” she directs,
“you take me to the hospital”.
“Why?” I ask.
She rushes down the hallway and I follow. She has picked up her Dorothy the Dinosaur handbag and  starts to pack it.
A plastic mobile phone, a pair of undies (important when you […]

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Ivy update, I’ve never wanted something more… I think.

Today we went to the paediatrician.
Ivy has lost just over a kilo.
Her cortisol levels are out of wack.
Her iron stores are low.
Her chest x - ray looks better, the pneumonia is clearing.
Her kidney functions are still okay.
Her  left ear is discharging, her other is infected.
Her white cell count still high.
She is still sick.
But
it’s time to move […]

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Irony.

Irony is;
when you discover that your daughter has mycoplasma pneumonia and the hospital doctor tells you the best oral antibiotic to treat it is the very same long term antibiotic (Erythromycin) that your paediatrician only ceased a fortnight ago, in favour of Keflex.
 Bwahahahahahahahahahahahahahaaaaaaa!!!!!!!!!
So, here we sit on three different IV antibiotics, waiting for her lungs to come […]

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48 hours…

…and we are home again.
Ivy is tucked up in her own bed as I type.
Is she 100%?
No -  but I am coming to the realisation that maybe she will never be.
Here’s to;
 a new antibiotic. Keflex, our new wonderdrug (fingers crossed).
At least four weeks before she crashes again.
Time for her to play.
Time for her to laugh.
A hot […]

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So here we are.

The paed called late on Friday night and I told him the Ivygirl was sick, really sick.
You know, that frightened, sick in the guts, knot in your throat, something bad is happening worry that you get when someone special is sick?
Yeah, that’s been me for a large part of the week. (As if you guys […]

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Where I talk about febrile convulsions…again.

In the small hours of Wednesday morning, Ivy, who, for all intensive purposes has had a great month, spiked a temp and had a febrile convulsion.
It was only one.
My mummy head screamed to scoop her up and take her to the hospital but just as I was about to leave (It takes an hour to […]

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Crazy…

I know you all know I’m crazy, right?
So it will be totally safe to tell you that I have been having these awful nightmares and you will accept that just as you accept that I am as nutty as a fruitcake.
Nightmares are a recent addition for me, as an adult. Sure, I had them as […]

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Cushing’s Syndrome

Ivy has the beginnings of Cushing’s Syndrome.
Here is a picture of Ivy when she started the prednisone
.
This was about a month in, January, weighing just under 12 kgs
This is Ivy at the beginning of May.

Weighing it at 15kgs.
See her face, the roundness, the loss of her neck? It’s known as ‘moonface’ and is a typical sign of […]

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Throwing out a line.

Someone asked me what it meant for Ivy to be immune deficient and I have had a really hard time coming up with a description until someone else from a support group I’ve joined recently did just that…
” The best way I can describe what is going on is this:
 A person with a normal immune […]