It’s comforting,

the nest.

It has been a tradition in our house.

Each of the kids, in their younger years

and still sometimes now,

if they’re hurt

or sad

or sick

we build them a nest.

Pillows and blankets,

solace and warmth

fashioned into circular swirls of support

all on the the floor

beside the place where the home parent is.

Sometimes it’s on the lounge.

Sometimes built up on the kitchen table

but always the same  -

a tangle of  textiles,

and love.

At times, food and fluids are placed within the nest, along with the mini dvd player and toys,

there are always lots of toys.

The nest is mostly a solitary place.

Time for the little bird to mend

but sometimes others come to sit

or snuggle

or watch

or comfort.

It’s something we’ve always done

and something they’ve always loved

and in some small way

I like to think

it helps them to heal.

Two weeks and two  days after the last infusion of IVIG

Ivy is sick.

It’s not surprising, really, considering she didn’t get the whole dosage of the Intragam P

Two weeks and two days without IV antibiotics and both of her ears are discharging.

Growth: Staph and Pseudomonas.

The staph is just your garden variety though

and so the paed

has decided he will trial her on our old friend Erythromycin.

I’m not sure whether to laugh or cry.

Part of me lives in hope that the oral antibiotics will be enough,

that we can avoid the hospital and make it through the rest of the week.

Then it will be IVIG time again.

Plus the paed is off to Sydney.

Plus David is running training.

So next week would be a much better week for Ivy to fall in a heap, all round, it seems.

Part of me wants to be thankful that it is only staph A

and not the dreaded multi resistant staph that plagued us last May, June and July (okay and parts of August and November too)

but

another part of me wants to throw my hands up in horror.

Staph!

Again!

Pseudomonas!

Again!

It’s only been two weeks and two days!

Also;

(and I hate to be the pessimistic one in this relationship)

I don’t think the orals will do much to help Ivy, we are long past that

and if the EES helps with the destruction of Staph, we are just making way for the Pseudomonas to take hold.

Pseudomonas and Ivy have a long history together.

That nasty little bug makes Ivy acutely unwell,

very quickly

and

it gets into other places

like  the lungs and  her eyes.

I suppose you could say the Staph is our friend, right now.

It’s making it almost impossible for the Psuedomonas to take hold.

Staph loves oxygen

Pseudomonas loathes it.

Bacteria 101 at its finest.

The fact that the Pseudomonas is there at all though, is just not a good sign for the girl

and if I was anything worth my salt

I would get back on the phone with the doctor and tell him

that I think

that IV antibiotics are the only thing that will clear this new infection

or old infection, revamped.

Who knows.

The other problem is Ivy’s inability to stomach oral antibiotics…

I could go on and on but it all seems so overwhelming right now

and stressful

and frustrating

and repetitive.

The sad thing is,

I think it will mean ballet is out for the girl

and pre school too

and

for this week, at least,

we will be lounge dwellers

once more.

“Jump and you will find out how to unfold your wings as you fall” - Ray Bradbury.

The theme at I heart faces is jump for joy.

This blog has gotten me into all sorts of trouble lately.

Apparently,

I say too much,

or not enough,

to the wrong people

who are really the right ones.

I’m too selfish,

I feel sorry for myself too often,

I talk too much about Ivy,

not enough about Ivy

and not enough about the boys

or the girls

or my husband

According to some,

‘nobody’ wants to hear about my low points

but ‘nobody’ wants to hear about my good times either.

I’m not allowed to form an opinion on the medical system,

the doctors

or on anything, really.

I am being inconsiderate, if I do.

I started blogging because I felt alone.

I continued because I liked the feeling that somebody was out there and cared enough to comment,

to take an interest in me and my thoughts

but I was never ready for the negativity.

It was not something I factored into keeping a blog

and I wonder why I’m still going somedays - although I have no plans to stop.

I find myself censoring my posts more and more.

Keeping it real just seems too much for some people

and so

instead of writing about grief

instead of writing about illness

and worry

and doctors who totally let us down

I try to sugar coat it.

It’s my space.

I know it

but

I can’t deal with people hating me

just because I write my feelings into a post.

I’m not coping with the meanness.

Today I’m angry though,

angry that I have let some judgmental people get in the way of

what is essentially

therapy for me.

So, for the record;

Ivy is sick.

Our doctor let us down

again

My father has been dead for four years tomorrow.

AJ broke his finger and can’t play for the representative team this year.

Noah had tonsillitis but he’s good now.

He really is.

It’s coming up to William’s birthday and anniversary and I find myself teary and self absorbed some days

and angry with myself most others for still being teary and self absorbed six years on.

I’ve put on heaps of weight as I try to take in more red meat so I can get my iron levels up, so I can go back to donating blood

and I hate it.

I  got my hair cut short, because I can’t deal with long hair and another hospital stint (and it’s coming, oh yes it is).

After 24 hours of short hair, I want my long hair back.

I can be selfish

and I do feel sorry for myself sometimes (I’m only human)

and I probably will write about any or all of these things, if I want to,

at some time in the near future.

Make of it what you will.