The girl has been fragile.

Her port site has been tender and the pump has been beeping intermittently  at us.

Warning us, maybe.

The antibiotics that she has pumped into her have minimal side effects

but I’m wondering if she is anaemic again

and if it’s the medicine that’s causing it.

She has been tired and pale and grumpy,

so grumpy.

It could be that she is just sick of the whole carrying around an extra two kilos worth of pump and fluids, the constant needling of her port and general poking and proding

but something tells me it’s not that.

Yesterday, we went to see the paed.

It was before Ivy’s re accessing of her port.

He looked in her ears and declared them clear.

He asked if she’d been well

and then he told me

that they had their first confirmed case of flu in the paediatric wards

and that it was a bad one

and that I should keep Ivy away from everyone and away from the hospital.

“Winter is coming”, he stated ominously.

There is nothing more terrifying to a mother of an immune deficient child, hearing that Winter is going to be bad.

Now, I understand all about isolating your child from the world – been there, done that.

I also know it doesn’t work unless I can isolate everyone else in the family too.

Kids go to school, husbands to work, people get sick

and there are no promises that Ivy will stay well.

Never any guarantees.

I guess it is unfortunate that she was born into a family of such large proportion.

The other thing is;

how can I deny her a life?

How can I not allow her to be part of society?

She needs to get out and make friends, she needs to interact.

She needs activities and play dates and time to just be a child.

I can’t lock her away from ballet

I can’t put her preschool days on hold.

Also: the whole stay away from the hospital thing?

Impossible,

when you have to go there for appointments and medication two or more times a week.

Life keeps moving

but it’s coming

Winter, my most hated of the seasons

is coming.

So, the antibiotics were to continue in a one week off, two weeks on cycle

and although, I feel as though that is ultimately not going to be worthwhile for Ivy’s health (or lack there of),

I agree that it has been lovely not to have  been in the hospital for all of April and now half of May and that it’s  definitely the antibiotics preventing that.

The spanner in the works

is that Ivy’s port site is becoming traumatised again

and the nurses and the infectious diseases doctor believe that it needs a good break

and if we keep pushing it

it will end up no good to us at all.

Let me tell you, if you want to put a mother of an immune deficient child in a quandary then offer up this scenario.

The paed says she needs the antibiotics.

The Out and About team feel she needs a substantial break from them, in order to give her body time to rest and heal the access point.

The access was fine, yesterday

however, it was very hard to flush and it was only after fluid was pushed through the port at a high rate, was it deemed okay.

Today I have flushed the darn thing twice because the pump has been bleeping and pinging its cry that all is not right with its world.

I’m loathe to pull out the needle and try to re access her, unless I absolutely have to

but something tells me, I will have to before the week is through

and something tells me that the nurses are right

the port will need to be rested

but Winter is coming,

with all of its nasty bugs and unrelenting sickness,

it’s coming

and I’m not ready.