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.

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7 thoughts on “Pre Admission Tradition

  1. Thinking of you all. You’re all doing a brilliant job and you must get so tired of “coping”. We are in Italy on our way home but keeping up with what you are up to. Hope Violet’s flu doesn’t cause problems. Love and hugs from Garry and Ros

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  2. You are wonderful parents doing the best you can for your precious little girl and her siblings. May the Violets health continue to improve and you can all be home together forever.

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  3. I find these Blogs very interesting and informative. Like many others, I have been following Violet’s journey from the beginning. Not a single day goes by that I don’t think of her and her battle with this horrible thing.
    Violet reminds me so much of my 8 year old granddaughter. I quite often am brought to tears, and I don’t even ‘know’ Violet as a person. It breaks my heart thinking of what she is going through. I can’t even begin to imagine what you guys are going through.
    She is very fortunate to have the parents she has. I also feel for other children going through the same or similar and whose parents are not quite as good with handling the situations thrown at them randomly and also not so randomly.
    Stay strong… heartfelt prayers coming your way.

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  4. Words always seem inadequate, but our heart goes out to you all, & you are continually in our thoughts. You are all an inspiration, with your love, faith, wisdom, patience, understanding, & so much more. I pray you will find the peace you deserve. All our ❤️ Bruce & Vicki

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