Moar hospital!

Oh, Poppy. You are in hospital again.

Eight months and one day, Poppy at Monash Children's, 27 August 2017

You came home with us for about four days, caught a chest infection off your sister, got steadily worse, and had to come back to Monash Children's for oxygen and suction.

You've been in for the best part of a week, and you finally seem to be on the mend.

I'm torn between my love for you and wanting you to be around and wanting to see what 'new Poppy' is or will be like; and the fact that we've already decided and agreed with all the doctors that you should have minimal intervention.

Where does quality of life care cross the line into life-prolonging intervention? It seems to be the 'vibe' of the thing. I feel like we've laid out some pretty clear guidelines, though: no form of ventilation, and no resuscitation.

Hopefully you will be able to come home in the next few days.

I can see that we're going to need to make a concerted effort to get Elsie to cover her mouth and nose when she coughs and sneezes if we are to avoid yoyoing in and out of hospital for the rest of your life.

Not looking too good, Monash Children's, 24 August 2017

OMG, going home? WTF!

Poppy! Poppy! Poppy!

We are going home today.

Nine. Weeks. Later.

The longest, darkest, hardest nine weeks of my life.

That's saying a lot, because I've had some pretty awful times in the past.

Off-hand I can think of at least three solid contenders for Worst Thing That Ever Happened To Me before this; but that's not what this blog's about so I'll leave them in the past where they can slowly fade.

And so, 10 days after I packed our suitcases and chose your cremation outfit, I'm taking you back.

My little baby is coming home.

So shiny

So, it took a few days but we are back in hospital.

Damien is a very action-oriented person, so he found waiting around over the weekend and half way through a new week supremely frustrating. But you can;t rush the public hospital system.

The enforced separation was really beginning to wear on Elsie, too. She just wants her family all back together - and who can blame her?

As Damien pointed out, this has been the worst holiday ever.

Little cutie,16 August 2017

Anyway, now we're in the swanky new Monash Children's hospital. It's bright and light and clean, and every ward has playroom and a parents' lounge. There's even a daybed in the window of your room for me to sleep on if I need to stay in with you.

You've had an EEG today and there is now seizure activity visible that was not observed in any of your previous three EEGs. Developing seizures is something that happens to Rett girls. You're going to start on some anti-seizure medications.

Nice hat, Poppy. 17 August 2017

You've also had a visit from the occupational therapist. She's made you some cute little splints to wear, to stop your hands from becoming useless. They look like tiny sparring gloves!

Still with us!

OMG Poppy, you're still here!

We'll be heading back to hospital this week to inform a longer-term treatment plan, observe your lung function and check for seizure activity.

You have a new version of 'crazy eyes' where you just stare up into the corner of your eye and vacate your body for minutes on end. It goes anywhere from 15 to 45 minutes. Other than that, you seem pretty good - insofar as one can tell.

You've definitely gotten weirder over the past eight weeks. The Rett syndrome has done a real number on all of us.

Still with us! 13 August 2017

New normal?

We are still at VSK.

You're defying all advice, and simply refuse to quit.

Now that you're off sedation and don't have a ventilator tube in your face, I can really see the progression of the Rett syndrome.

You're not the same person at all.

Elsie and my parents are staying at our house while we are here. They just come for visits. We're in a kind of limbo.

You could be progressively shutting down, or you might muddle along like this until a lung infection compromises you and knocks you off your perch. Certainly your breathing rates are not normal.

In the next few days we will have to seriously consider bringing you home. VSK say we can stay as long as necessary, but we really need to go home if this is just the new normal.

Extra time

You're defying the predictions and best guesses of all your doctors and muddling along.

Your father and I are hunkered down at VSK with you, waiting to see what happens.

Last night we set our alarms to get up every two hours and check that you were still breathing. We felt sure you'd succumb to low respiration overnight.

Poppy and Daddy in the morning, 8 August 2017

For a little while this morning I imagined what it would be like to take you home with us and keep you; but this evening you're a very funny colour, and I've no doubt your lungs will carry you off sooner or later. If an overnight apneoa doesn't get you then you'll likely develop pneumonia. It was a chest infection that landed you in hospital all those weeks ago.

I wish that you were gone already. I want a peaceful end for you, not a slow decline into illness.

For the moment, we are all enjoying our extra Poppy cuddles and trying not to get ahead of ourselves with the what-ifs.

Poppy in the evening, 8 August 2017

The very worst day

Somehow I slept last night.

This morning we had to be at the hospital by 9:30 to be sure we wouldn't miss your move to VSK. When we arrived, you had a cute little bow in your hair. Your nurse had dressed you up for your excursion.

You looked so beautiful.

Poppy's last day in PICU, 7 August 2017

It was a tense wait for the patient transport to arrive. Your dad and me snapped at each other a bit, it was not our finest hour - but why should it be?

I feel like I have some understanding of what death row inmates must feel like. Everything I did this morning was for the last time. The last shower, the last express of breast milk, the last cup of coffee, my last trip up the hospital stair well ... you get the idea.

I can't tell you how many cots I've seen wheeled out to the waiting wards of the swanky new children's hospital across the way, and how every single time I wished it was us. Now we're taking what feels more like a 'walk of shame'.

After 7 weeks in PICU, we are to be released under the shittiest of circumstances.

You're on a trolley, hooked up to a mobile ventilator, with an intensive care doctor and nurse in tow and two patient transport people. You've been given some chloral hydrate for the ride but, even so, when the cold air hits you as we exit the hospital for the last time you scrunch up your nose and shake your head in objection. It is a bitter day.

I'm not sure how long the ride from Monash to VSK takes, because my mind is racing against everything that's happening.

When we arrive, we are greeted at the door and ushered through the hospice to the family accommodation. The heaters are on, so it's lovely and warm, and there's a hospital-style cot for you to rest in. The medical staff transfer you and all your life-giving equipment from the transport trolley and the drivers depart.

We settle down with the ICU doctor and nurse to wait for your sister and grandparents to arrive. I won't let them remove the tube until everyone is here.

Donating life

We've decided to donate your heart valves and pericardium, Little Poppins.

We would donate more, but there are no babies in need of donor organs right now (luckily).

Poppy, 3 August 2017

Your dad and me are both registered organ donors, and it just seems to us like some good should come of this terrible situation.

Poppy cuddles, 3 August 2017

Popsicles and fart bags

For someone who was with us for such a short time you had an impressive array of names:

Poppy, Poppy-pants, Popsicle, Pop-tart, Poppin-fresh, Popticle, Poppins, Pops, Pickle, Chuckles, Chicken, Noodles, Fat-fat, Fatty, Fat face, Fart bag, Farty-pants, Baby Poppy the baby.

Little Fat-fat, 18 May 2017

Very Special Kids

Today we went to see the place you'll die.

Very Special Kids will help with your final palliative care.

There is family accommodation there where we can all stay together, and they can provide family counselling and help with the logistics afterwards. It's an amazing service.

Once we remove the breathing tube, we expect to lose you within a matter of hours.