Nope, second time, first time in day stay.

We had no idea.

Anyhow they ran it in a whole hour slower and tonight I am looking down the barrel of a bad night.

She already has the sweats.

I guess we will need to tweak a few more things before we get the mix right.

In better news…

David called the cardiologist’s rooms again and asked if there was a cancellation list. He told the receptionist that December was way too long for us to wait.

That we had lost our son to a cardiac abnormality and that I was finding the whole thing slightly stressful.

She agreed.

She said she would see what she could do and when she got back to David, she offered us this Friday at midday and it will be done by the cardiologist himself, not the sonographer.

I cannot tell you how grateful I am for David and for the kind receptionist who pulled some strings so that I would not have to suffer weeks of worry.

I love it when good things happen.

It’s day 31 and it’s already been put off once because Friday is not a good day for anyone, apparently.

Not alot gets done on a Friday.

Young doctors and nurses minds are filled with thoughts of the weekend,

apparently.

Monday was better for us anyway.

The thing is, the hospital, who acknowledged our admission two weeks ago, with a date and paperwork to sign, now has no recollection that we were to come in, no allocated time for Ivy.

Not in admissions and not on the ward. 

In the letter we received it stated that we would be contacted the day before with a time. Of course, that call never came so last night we started to worry.

David contacted the hospital and that is how we discovered that Ivy does not exist.

At least not on paper.

This morning I have woken early, in a dead set panic because  in the last 24 hours, Ivy has quite obviously been going down hill and she needs the Intragam.

The nurse on the ward, who told us that there was no paperwork for Ivy told us to come in early, at 8am, to sort things out. 

The paper work we have says to go to admissions, which doesn’t open for a full hour after we were told to be at the ward.

The last time we went to the ward without going to admissions first the nurses wouldn’t touch us. Would not even do a blood pressure for liability purposes.

When we spoke to the paediatrician last Wednesday, he said he had asked for her admission to be in school hours, so I could get the big kids off in the morning and be home for them in the afternoon.

An 8am start means leaving home at 7am and the school bus leaves at 8:30am

and

it’s the first day of term post school holidays.

David’s mum will come up to look after Noah but will have to leave her house at 5am to be here by 7am.

My head is spinning.

Having to go through the process of cannulation and the infusion is stressful enough without the mess of administration misshaps. Trying to explain to Ivy why she is being stuck again and then have to hold her little  body still while they set her up makes a  piece of me die each time, not to mention the worry of side effects and the like that rack her body afterwards.

I know I should just shut up and be grateful but dear Lord, you’d think this could just go smoothly, after everything.

I’m not sure what to do.

Do I go in and hope that it won’t take too long to sort it all out, do I wait for admissions to open and then approach them or do I wait and contact the paediatrician and see what he wants us to do?

Or do I just call the whole thing off  for today until we have things a little more concrete because at the moment, I think we could all use some stability.

Outside our window there is heavy construction work going on. Huge diggers and trucks and jackhammers  pound pound pounding through my brain. A constant drill whirs in the background. Cars fly past. I can’t even hear myself breathe, let alone think.

Inside the ward babies are crying out, their most wretched, ear piercing wails for help because they are in pain, because there is no other way for them to let their carers know that their bodies ache. For comfort, for food, for medicine to pump through their veins to help them recover and rest.

The heartbreaking sobs never seem to stop.

Only because all the children here are distressed and if for an instant one relents to sleep or food or a cuddle, another has already started.

There are cleaners and orderlies. Trolleys of varying sizes trundle up and down the corridor of the ward. Delivering food and cleanliness and dry humour from the weary workers who push them.

Parents of the children who are to be discharged today are set free from their rooms, small babies crawling up and down the hallway and mothers pacing waiting for their release forms, waiting for life to begin again.

Waiting for normality.

Others cry.

Parents who have not yet obtained their healthy child status stare out into the glare of hospital life, wishing for relief, a meal, a toilet break and knowing they are things that will be scarce for today.

The relentless ping of the monitors and distributors, the tools which keep things in order resonate in our small room and in almost every room around us. 

Nurses and doctors, characters of various form (clowns, captains and  therapy animals) break the seal of our sanctuary and the cacophony of sound flows in like an ocean.

Doors open and close, they sometimes slam, chairs grate along linoleum floors, phones ring loudly, so as to be heard above the people who call out to others they know and some they do not. They cough and sneeze and snuffle and belch, their conversations seem to call for inclusion of my overstimulated mind. There is music and television blaring in the background and I feel the tension in my shoulders and my neck crackling like a growing fire.

I look out to the trees only to be confronted by a large yellow beast baring its scoop to me, like a jagged, monstrous mouth, so I close my eyes and watch the flecks of my soul pass through the darkness like spirits.

Humanity at its loudest.

Hospital humanity.

The girl in the bed sleeps on though, oblivious to the hum of the ward, the din of the construction work and the silent scream that erupts in my mind.

The paediatrician has been.

We still have two more days before we will earn our wings and fly away from here. 

Although I wish it were sooner, this place, in all of its chaos is strangely safe.

I know the routine, I know most of the nurses and almost all of the doctors.

There is comfort in this hubub of humans.

My sore head is nothing compared to the fear of a sick child so I will stay put and know that hospital can also be a haven.

I cannot relish in the sights and the sounds but I can stand firm in the knowledge that this is where we need to be for the girl to be well again.

If only for a while.

The mini break was heaven… for everyone except Ives and I (and in parts Noah).

We got home on Sunday

and went to hospital on Monday.

Ivy has pneumonia.

The paediatrician was not involved with her admission.

The nurses on the paed medical ward are angels.

The comment left by ‘Suzie’ hurt.

Alot.

I’m sure that was the desired effect

and I don’t feel like talking much

but I just wanted to let you all know how much I love and appreciate every single one of you for standing up for me, sticking by me and for wanting to build a safe space for me.

That means alot.

I am feeling very fragile (can I say that without sounding selfish?).

No more words for now but

here is one of my favourite photos from our ‘holiday’.

I’ve titled it ‘friends’

because we all need them and I am very lucky to have so many.

Ironically, the first room we entered almost twelve months ago.

(Has it really been that long since that fateful admission, that first febrile convulsion?)

It has dragonflies and kites and apple trees painted in bright colours, this room but it is  still a cage.

We are looking forward to the escape, my girl and I.

Even though, it may take up to six infusions for the IVIG to work, I am hopeful we will not need this room again… or at least any time soon.

We are all looking forward to Summer.

I’ve not much to tell you yet.

Not really.

An anticlimax, I know but Ivy needed IV antibiotics first to clear up an infection she has had going on for the last week. Her ears are still hanging on, not willing to give in just yet, to concede to this foreign thing known as health.

Tomorrow is the day though and I am excited and nervous all at once.

There are some risks, there always are.

Sometimes I feel like I am the proverbial killjoy.

The ever steadying arm slicing through the optimism,  that comes in the form of our paediatrician.

I talked to him about side effects and pleaded with him to take care with my baby, because she does have a history of reacting to medications.

He said, “I know, Tiff, I know, I know her just as well, I know her too”.

I was taken back at first, he sounded wounded.

 He does know her and he will watch over her and I am thankful for that.

I am just a worrier, I think.

Today is dragging badly, teasing me with the promise of tomorrow, Ivy is asleep and I really don’t know what to do with myself.

So, instead of boring you with my stilted words, I will give you some photos.

A little photo therapy might be good for the soul…

Still alittle bit sick…and the hats? Cover up the smell from her discharging ears.

IV antibiotics.

Keeping busy.

From my chair.

I am forever in the debt of one particular person, Veronica, who started this amazing, wonderful  journey. One person who showed me that there were (lots) of people out there who cared about my girl and were willing to fight with us.

Oh, it’s just not coming out right because I am so excited!

Thank you to everyone,

really.

From the very bottom of my heart…

SHE GOT IT!!!!!!!!!!!!!!!

See you in hospital, we’re for admission tomorrow, at 10:30 am.

The princess hardly moved for the whole admission process, waking briefly for cannulation and then again when they swabbed her ears.

It was only me, who remained in a sleepless, helpless land that is somewhere between salvation and hell.

So, here we are, my friends.

I don’t know what to tell you.

I could regale you with stories of surgical nurses mincing around at the thought of an infectious child on their ward

oooh boogety boogety.

I could tell you about  the fear that jumped into my throat at the thought of meningococcal (it’s not, don’t worry)

or I could ask you all to tell of something good that has happened for you lately

because…

well, because I need to hear the positive.

So, indulge me…

*********************************************************************

Yesterday David took the night shift. As I was driving from the hospital I saw a sign outside one of the churches.

It read: Get high quickly. Count your blessings.

I could think of just one and it left me high as a kite.

Home.

********************************************************************

The paediatrician came in early today, before I arrived. (I think the nurses alerted him to the fact (paranoia much? Oy)).

He checked the girl over, gave her the thumbs up and said he would see her post op.

Post op…

Tomorrow.

I still don’t know where she is on the list or what time.

I was wanting to ask him some questions about her iron deficiency, which is getting worse by the day.

Like;

Why

and

how

and

what are we going to do about it?

Also, what does it mean for her post operatively? Will she be at an increased risk of bleeding?

He came in yesterday with his army of registrars and residents to protect him from the anger of our false start and told me about her iron stores being low, lower, worsening. He asked me if I had any questions but I could not think on my feet.

Bugger.

I should have thought faster.

**edited to add; she’s first on the list for tomorrow. 9am.

The whole diagnostics of having six other kids to think about and a husband who is unable to have time off is headache worthy.

I know it is going to be a long, l o n g week.

When Maddy stresses, she cleans.

She goes into some crazy OCD type frenzy.

That’s how I know that she is really feeling it. What’s more (and what makes it worse) is that she tries to  rally everyone else to help and when they don’t because I am not there to  bark orders allocate chores, everything falls apart for her.

So yesterday, when she started vacuuming the floor at 7am, I knew it was going to be a very, very long week.

Before I left, I made sure as much was in order as could be, knowing the logistics of six children and one husband can be overwhelming for all  involved.

We took the hour long drive to the hospital where we found, the ward not ready for her, the doctors, not sure why she was even there.

They rallied well but the unease of spending a week in the hospital was growing as the logistics of Ivy’s stay seemed unclear.

When the paediatrician came and declared her the best he’d seen her in a while and that it was tragic to have her in here, I just wanted to pick her up and run.

My fear felt stupid and unjustified.

Logistically, last night was a “nightmare” for the doctors, who declared themselves run off their feet and so when they turned up to her room at 11pm (23:00 hrs in nursing time) and boldly suggested I wake her up for cannulation, I was upset.

I said no.

So day 1 of hospital was a bust, with no IV antibiotics on board.

I was angry but the paediatric registrar was so nice. When she told me she could associate with how we were feeling because her daughter was going in for neurosurgery next week, I felt terrible for even thinking bad things.

For being here, taking up space and time and resources.

For being frightened.

Yes, my friends, it’s going to be a very, very long week.