It’s Monday tomorrow

and so I’d say we’ve made it without a hospital admission.

Once her heart rate came down to an acceptable number I knew (hoped) we would.

The thing is her ears are still gross, her temp is up and down

and the Erythromycin has played terrible havoc with her system

and so

she has blisters on blisters,

an upset gut,

and is generally just miserable.

Her cortisol needs are up and so we have had to push her Prednisone up too

and that is a whole other set of issues, right there.

I’m wondering how long she can live like this before it really starts to affect her soul.

I’m wondering why,

after twelve months of hearing that oral antibiotics don’t do anything any more,

we have just finished a course of oral antibiotics.

How could the paed think that it would be enough?

Tomorrow is IVIG day.

I’m looking forward to it and loathing it all at once.

Wishing it away.

I know that the Intragam will give her the boost she needs,

that her body will not have to work so hard to try to heal itself.

I know that it will give her the best chance at not picking up anything else

but

she’ll have to be accessed tomorrow

and as it stands

nobody is sure how that will go.

Access failed four times last month

and even the paed was unsure of what he was palpating

when he checked out her port site last week.

I’m scared.

I bet Ivy is too.

The stress of advocating for Ivy is great.

I don’t care how sorry for myself that makes me sound.

It is.

Being vigilant and fighting

when it is something

I really would rather run from -

it’s emotionally exhausting.

Making sure the infusion runs smoothly.

Worrying about whether the doctor turns up

waiting

feeling angry when he doesn’t

having to ask the nurses to call him

chasing him to get answers I need.

It’s awful.

On top of all that, I need to establish

what we are going to do.

The EES runs out tonight.

She has one more dose left, with no repeats.

My feeling is, without any coverage, things will go downhill very quickly from there.

I joke around and say that I will be taking my machete  and my stomping boots

and that I am taking along extra gripper needles and anyone who hurts my baby, will be accessed within an inch of their lives

but the truth is…

the truth is

I just don’t know…

I won’t do her justice,

that’s what it is.

I often feel as though I am  not a strong enough person

to  advocate adequately for this girl, who is in my care, who I love more than life.

I know what she needs

but I often don’t know how to get those things for her

without upsetting the natural order of things.

It’s Monday tomorrow,

so I’d better figure it out -

fast.