We are on day 5 of being in the high dependency unit at BCH, girl child is finally recovering from surgery and on her way to looking like a human being again, so this is the first opportunity I have had to log my thoughts on the whole experience thus far....
It occurred to me last night that while the ward and nurses are lovely and take spiffing (it's been that kind if stay I need to exercise my extensive vocabulary!) good care of my baby girl that what they really need to include in the welcome pack amongst the smiley cartoons, stickers and other related child friendly stuff is a guide for parents so that we can understand the hints and tips of the trade of being a hospital parents and most essentially an etiquette guide. Don't get me wrong I haven't suddenly become a lady or completed finishing school, there's just some things I've had to learn the hard way...
1. Sleeping...
Do not expect to get any solid sleep in the ward, not even when your child has made significant progress and you can finally relax. Firstly if you are lucky enough to acquire a sleeping vessel (more on vessels later) in the HDU they do not allow camp beds, but recliner chairs in case of emergency, understandable but do not be fooled by the term recliner chair. Once you have sat and attempted to sleep in it after the first day you begin to hate it's very existence with more and more furosity as the days go by. It does recline indeed but only to a certain extent which unless you are shaped like a W does not suit or fit anyone's actual body shape. This is even worse if like me you have never slept on your back a day in your life, although I did try sleeping on my front in this baby the thought of my ass in the air for the whole ward to see was just too much. You can also rule out the foetal position because trust me on this it just isn't happening.
In addition to the bleeping and shuffling and noises of pain (that's just the parents not the patients) obviously regular observations have to occur which means that while you are not sleeping in the recliner chair you have to leave a gangway for the staff to walk down in the night to check monitors etc... This often leads to having a bum or two in your face in the early hours of the morning, also if you don't leave a gangway, you are at risk of waking up to find a nurse on your face, trust me when I say these blighters are both determined and acrobats, I wonder if it comes with the training.
And as for the air con you can be guaranteed that wherever you sleep in this ward you will be under the air con unit that has a mind entirely of its own, and it makes the most amazing noises throughout the night, causing me to feel that I may never be able to sleep without it's rumbling when we make it home. Also the plumbing has this system where all the sinks turn themselves on for cleaning purposes and this is normally around 1am making every parent on the ward need the toilet (of which there is only one of) and have to fight their way out of recliner blanket hell (see below) to fight for the toilet.
1a Sleeping equipment
This required its own sub section because firstly the time to get your basic sleeping essentials, pillow/ blankets and sheets is as soon as you spot he laundry lady (around 7am) noted by her greeny blue outfit. Trust me when I tell you that blankets and pillows in this ward have monetary value, there are days when I would swap my soul for an extra blanket. As for pillows it's a dead mans shoes position, you have it swipe them from the last discharged patient if you actually want to acquire one... Think the hunger games only for pillows.
The blankets in themselves are of an odd nature, neither one thing or the other, initially all folded up they are like dumb bells these things weigh a ton, so you can't actually use them doubled up unless you have sensory issues and enjoy deep touch, if you are like me and don't like to feel like you can't move/ are being suffocated in your sleep then you have to unfold them all the way, which makes them into an enigma because then they become the thinnest blankets in the world and you require at least 3 of them.. Thus getting you back to the being smothered to death problem. Somewhere throughout the not sleeping night when the air con really has at it you will find your self hoarding these blankets like some kind of blanket whore despite how much you hate the damn things. Also here blankets do not cover the entire body of an average sized person, so you have to invent this crazy patchwork system, which when you have a nurse on your face in the middle of the night all falls apart.
Basically expect to miss sleep while you are here...
2. Dress code
You can gauge how long a parent has been here by their clothing, we all naively come in here dressed like rational human beings with clean clothes and matching underwear... The longer you are here the more mismatched you become. Pack what you like in preparation by the end of the stay you won't give a crap who sees you wearing what, and or when. I know this because in a I need comfy hospital clothes I had hubby buy me some jogging bottoms with the word geek on them in tardis blue (natch) well when I first put them on and discovered that these were indeed the chav pants to end all chav pants in that they highlighted my ass and lady garden but sagged everywhere else, that there was no way in hell I was wearing those in public. Turns out by day 5 the public don't care and I can hug my ass and lady parts and no one bats an eyelid...
Also do not bother with make up or hair spray or any of that because you won't care and the just out of bed look is the fashion. In fact us long stay parents will sneer at you and feel pity for you when you first come in all clean and fresh faced, knowing what is in store for you...
3. Food / parents room.
Apparently amongst the not sleeping and worry and dressing like a chav you have to eat food, like real food. There is a few schools of thoughts about this and the food situation is not unlike the food situations in an office
- no matter how much you love it, it is not acceptable to eat liver and bacon on a liver ward.. It's just wrong
- you can label your food and store it in the fridge but someone will still eat it, so if it's storable keep it in your bed locker
- if you really can't be bothered to make a sandwich and have to eat take away for the love of god don't eat it on the ward with the nil by mouth kids... Also makes the rest of wish we had what you did rather than our pathetic turkey sandwich
- additionally if you do decide to have a Chinese banquet in the parents room, complete with candles and romance please be aware that when I am in there I am likely to drool and watch you shovel MSG into your mouth as the candles flicker (true story) Also this makes the room smell like Chinese food for three days so everyone ends up with cravings
- don't bother with any diet, the day consists of munching your way through your body weight in junk because it whiles the hours away. If secret eaters were to come in here they would have a field day, except that there is no secret to the fact that is perfectly acceptable to eat an entire box of donuts in an hour..
4. The bathroom
There is one bathroom for parents on the entire ward, therefore you must observe the timings of other parents to ensure that there are no conflicts in others schedules or bowel movements (trust me this ward is obsessed with bowels). If you break into anyone elses routine by trying to sneak in a wee outside of your allotted hours the rest of the parents will give you stink eye for the rest of the day.
Showering is okay provided that you have no objections to being stoned in the shower at a rate of knots and you don't mind not being able to adjust the temperature. It is a pot luck of an experience as to whether today's shower will be bolts of ice or scalding meteorites. The ward provides towels and when I first got here I made the mistake of using only one, unless you are the size of a matchstick always take 3 into the shower. Also towels are as rare as pillows due to I suspect the nature of the size of the towels. Last night I foolishly got excited and thought I had lost weight as when we first arrived I could not fit the towel all the way around, last night I could so I did a little naked bathroom dance before realising that I had got my hands on one of the fabled adult towels. This brought me down to earth with a bump but I have refused to put said towel in the laundry for fear I may never see it again!
5 Other parents.
In order to prevent yourself from going mad it is necessary to make allies while on the ward. Even though I have spent my entire parenting life avoiding other parents and not making friends in the playground (not dissimilar to my childhood) it is an evil necessity with this ward. There are right and wrong ways of doing this..
- when you first arrive avoid eye contact, otherwise this invites the ward gossip to introduce herself tell you her life story and pump you for information that she can share amongst the other parents. This gives her status and allows her to retain her position as head parent. Additionally this allows her a sense of over inflated ego and she will spend the rest of the stay giving you the advice of how to be a liver parent and how to do it "her way"
- There are two types of liver parents, the competitive and the non competitive. Competitive parents children have far worse conditions than your child regardless of diagnosis, have the most amount of hospital stays (and wear these like trophies) and speak fluent hospital. They are also the ones that us other parents know that the staff have nicknames for and the most irritating. Non competitive parents just get on with their children's disease and can have a conversation that isn't purely about them.
- the parents room is a tricky one, some parents go to have parent adult talk and others go for just some alone time, you have to gauge this by whether they have their face buried in technology or are glancing around the room looking for conversation.
- it is okay to talk about stuff other than livers and poos and bowels and farting, but don't expect the conversation to veer to far away from these topics, as this are what we have in common. Shared knowledge is an important tool in dealing with other parents..., knowledge (not unlike towels and blankets) is power..