Pre Admission Tradition

Pre Admission Tradition

Over the 300+ days since diagnosis, 100+ nights as an inpatient across 16 admissions there’s a few things I thought I’ve picked up about the way I feel leading up to, during and after a hospital stay….

A week before admission

Yeah! I think we’re back to normal (or have adapted to the new normal), time to take on that next bit of renovation or gardening.

The week leading up to admission

As we subconsciously think about things (sleep deprivation, disruption to routine, juggling the older kids emotions), anxiety creeps in in various ways, usually by getting irritable for no reason.

Everything is normal, there is nothing to see here (kids can sense fear/worry/anxiety)

Ignorant bliss while secretly preparing… The easiest way to explain this is by example… Say last time we were at hospital we ran out of disposable forks and we know the best place for them is at a specific cheap shop, instead of saying we’re just going to the shop to get some forks we make up a story like “I’m going to the cheap shop to get some paper” (knowing full well we don’t need paper). Between us we know the real story.

The weekend/days before admission

Celebrate & enjoy, have favourite dinners breakfasts, watch movies.

Quick, do everything that we could have done in the last 3 weeks now!

Get those monkeys off our back that have been there for months … wash the car, clean the driveway, repair clothes, mow the lawn.

Pack. Colleen has reduced this down from 15 bags to one big bag (+3 bags of craft/activities)

Day of admission

Patient patients. Waiting, waiting, distracting, waiting.

Central line dressing change.

Can we go upstairs yet? In the bed lottery, where will we end up?

Get the bed, unpack, setup, wait.

Get hooked up to medication.

Craft, craft, dance, craft, full house, craft.

Days in Hospital

Sleep deprivation.

Depending on protocol, we’re on edge waiting to catch vomit, change nappies, comfort or entertain her.

Time breaks so we can eat and get coffee.

Juggle older kids school drop off so they have quality time and feel loved.

Find time for self (if possible).

If we’re ‘lucky’ and she’s an inpatient on Monday, we get the ‘pleasure’ of giving her a nasal and anal swab (two swabs, not one 😉). Mondays are more affectionately known as ‘Monday Bumday’.

As the stay gets longer, the hospital food becomes more appetising, the hospital bed is comfortable, the toilet paper is soft and you learn how to sleep and eat in sprints, one day blends into the next. What day of the week is it? Who cares.

We’ve pretty much got the routine of a week day sorted. Drop off kids, swap at hospital, sleep, repeat.

Day before discharge

Meh, one more day to go, don’t bother about replenishing food/craft stocks… Or should we?

Day of discharge

Patient patients. Waiting, waiting, waiting.

Drip, drip, drip. When will this end? WHAT, what do you mean there’s a second flush?

Just when you think you’ve seen the last person there’s one more too see and give going home instructions (oncologist/pharmacist/dietitian/liaison nurse).

Where is the doctor? Will we get the green light to go?

This day can be groundhog day, if something isn’t right and she doesn’t get the green light, its another day in hospital…

If we get to go, woohoo, everyone is happy, another admission over, but the fun doesn’t stop there.

Days/nights post discharge

Balancing the emotions of a very ‘not tired’ 6yo who’s had 2:1 attention and now has 0.5:1 attention (if she’s lucky) against the other two who just want time against the need to catch up on sleep requires LOTS of breathing.

Slow days to catch up and allow Violet time to get back to normal from side effects.

Get familiar with new medication regime.

Often nights are spent sleeping on Violets floor, either to comfort from nightmares or to deal with side effects (vomit/diarrhea/pain). There are definately some similarities between this and having a baby.

A week or so after discharge

Life is back to normal.. or a new normal.

I see you friend…

I see you friend… Swimming with kids… My child has a central line, so showering or swimming is not possible.

I see you friend… On holidays… My holidays have been all used up, filled with sleepless nights caring for my child in hospital. My last holiday was before she was diagnosed, wondering what was wrong, dealing with her whinging.

I see you friend… On a road trip / flight hours away from home… My Child is only allowed to be within an hour of the hospital

I see you friend… Having fun in the sun… My child is in medication that makes her burn even in indirect sunlight

I see you friend… In your active ware doing exercise, yoga, palates … I’d love to have any time to myself to do that

I see you friend… Kicking goals at work.. I’m so tired I have trouble concentrating and focusing on stuff

I see you friend… Playing with your share portfolio and investment house… I cashed in my shares to take more leave and spend with my girl.

I see you friend… With your horrible life, you couldn’t get a seat on the train, your coffee order was wrong, your tire was flat … I laugh at your ‘problems’, harden up.

I see you friend… With your aromatic and slow cooked dinners.. My child runs from smells before she vomits, we’ve been lucky to have a handful of meals together as a family over the last year.

You see me friend… I doubt you’ll ever understand what it’s like. Yes, at times I get jealous of what you have and do. But I love you all the same. This is only temporary.

I see you friend… the silent one who doesn’t post, the one I may not know… I know your problems are bigger than mine, I feel for you, I’ll probably never understand what you’re going through

The (not so) hungry caterpillar

The (not so) hungry caterpillar

A little girl’s bald head reflects the light of the morning sun.

It’s Sunday morning. Her sleepy eyes open – pop!- under the warm blankets is a very skinny, scrawny (not so) hungry caterpillar.

She asks her Mum for some food. (This equates to yelling as if someone is attacking her to allow for the fastest possible reaction time).

Her mother asks what she wants to eat. “I don’t know” she replies. “Just food.”

On Monday she asks for a cheese and bacon balls. After making a special trip to the shops, she takes one look and says “I don’t want them anymore.”

On Tuesday she asks for a choc chip muffin. After spending an hour baking, muffins are delivered fresh and warm, she picks it up and says “I don’t feel like them anymore.”
Her mother eats it.

On Wednesday she asks for a lime milkshake. After walking every street and scouring every shop within a 3km radius and returning with the shake, she takes one sip and says “I’m done.” Her mother finishes it.

On Thursday she asks for strawberries. Strawberries are delivered, tastefully arranged on a plate. “No” says the (not so) hungry caterpillar “they need to be cut smaller”. The now somewhat smaller strawberries are once again served. She takes one nibble and says “these taste gross.”

On Friday she nibbles one piece of cheese, one jatz and glances at a bowl of 2 minute noodles.

On Saturday she eats 1/3 of an avocado sushi, nibbles a choc chip cookie, a corn chip and a licks a spoonful of ice-cream. Her mother eats the leftovers. That night the caterpillar has a bellyache. She vomits said sushi. (Apparently seaweed does not digest quickly).

The next day is Sunday again. The caterpillar vomits once more and feels much better.

Now the (not so) hungry caterpillar is feeling hungry again. (See paragraph 1)

Mother caterpillar, however, is not so hungry. She has built a small house – similar to a cocoon around her middle. (She is still waiting for the butterfly to appear).