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.