Staying in hospital
I’m a well seasoned hospital stayin-er. My daughter has had numerous operations, inpatient stays, investigations. We are the family that rocks up, fully prepared, know all of the staff, and chat to other parents. But it hasn’t always been that way when we have been staying in hospital.
Walking into a hospital ward for the first time can be very daunting. Especially when the other children in the ward are extremely poorly, and I am desperately worrying about my own child.
For my daughter, it’s quite simple. I have now got it down to one suitcase. I need to pack:
- Cuddly Toy
- Blanket (to make the hospital bed less clinical and more homely)
- A few small toys
- Comfortable clothes – T shirt’s as it gets very hot in the ward.
- Very warm P.J’s – it gets very cold at night.
- Mobile Phone/Tablet
- Hair bands – her hair is long and gets in the way of procedures
- Wedge supports – to hold her floppy body it it’s sleeping position
- Paper & colouring pens – we can never find any in the hospital ward, and she loves drawing.
- Toilet Chair – OK..this doesn’t fit into the suitcase, but I leave it in the hospital corridor, along with other kids walkers, buggies, wheelchairs etc..
- A sliding board – To slide transfer onto the bed.
(Yes..I was exaggerating about the suitcase, and I lied about the simplicity. You got me!)
*Tip – It’s important to take medicines, especially Calpol. If you don’t and rely on the hospital to provide them, there is a long wait. A pharmacist or doctor has to be called to assess your child. Then they prescribe the medicine, then make up the medicine. All this can take hours, even a couple of days, if they are extremely busy. If you take your own, the nurses are happy for you to give it to your child yourself, as long as they can write it down in their notes.
These are the things that I do instinctively. As a mum, I always think about my daughter first, and myself last. I spend all of my time doing that. When it comes to thinking about me, I find it really hard. Though hospital visits are now a different story.
When we get to hospital, especially if we haven’t been in that ward or hospital before, the first thing I do is sniff out the playroom and more importantly…the parent’s room where I can make myself a cup of tea. I then find out where all the linen is stored and grab some sheets to make my bed, so I’m not trying to do it in the middle of the night. The nurses have so many important things to do, they don’t always remember to let us parents know.
I also see if there is a place for my husband at Ronald Mcdonald House . Never again, will I say anything bad about Mcdonalds. Ronald Mcdonald House is an amazing charity. A clean, huge big room, with an ensuite. After the trials of hospital, stumbling over to this amazing accommodation which is on the hospital grounds, is an oasis sent from heaven. It’s free and available to the rest of the family. It get’s booked quickly, so ask the nurses to try and get you a room (if you are lucky to have one in your hospital).
Every time you buy a Big Mac, put some change in the charity pot, it really helps us. Or click on the button, it will take you to straight to their donation page.
Things that I pack for myself are:
- Ear plugs – it’s impossible to sleep without them in the noisy children’s ward, especially when I am stressing about my child.
- Tea bags – the parent’s room always runs out. I take enough to share with other parents. It’s a nice way to start a conversation, and it’s really appreciated.
- Travel mug – the parent’s room always runs out of cups, usually because other parents are hording them and forgetting to wash them up afterwards.
- Big fluffy dressing gown – the ward always starts off as boiling hot, but at some point in the middle of the night, the temperature drops and all of a sudden it’s freezing. I use the dressing gown as an extra blanket, as well as to keep my dignity when the doctors come around.
- Modest PJ’s – I don’t want to jump out of bed in an emergency and then realise that everything is on display.
- Headphones – to watch catch up or a film on my ipad/phone/tablet, without worrying about the children hearing all of the swear words.
I always end up cuddling my daughter to sleep, when we are in hospital. My daughter struggles to sleep because of the noise, and because she is scared stiff of the procedure planned for the next day. I will admit, it’s not comfortable, as I am wedged in her bed, with the sides up to prevent me from falling out. The ‘mother and baby’ books all say that that is a terrible thing to do, and I will be deeply punished for doing that. These books never describe, me and my child and our stay in hospital. So I stick two fingers up at those books, and cuddle my child to sleep.
Can I do anything to help?
Whenever my friends ask me “is there anything that I can do to help?”, I used to say “No it’s OK thanks”, because I was used to just muddling through myself, and not asking for help. I was too proud.
Not anymore. I ask for food parcels. My friends want to help, the same way I would if they were in my shoes. Whenever my friends cook a meal, they make a little bit extra for me to heat up in the hospital microwave. There is a shared fridge in the parent’s room. Label the food and store it in there. My daughter’s alright, she get’s food provided for her, albeit not always very nice. Parents don’t get food provided, unless they are breast feeding the baby patient. Buying food in hospital is expensive and just adds to the mounting debt accrued on a hospital vacation. So a food parcel is the best gift to be received.
Staying in hospital is always difficult. We don’t want to be there, but we are, so we have to make the most of it. The good thing is, you are staying with a bunch of people who are all in the same position. If you are a talker, like me, it’s good to talk to other parents going through similar experiences. It’s always satisfying when you find someone else who’s child has the same condition as your child. We are lucky, as with Spina Bifida and Hydrocephalus, it’s quite common. Unfortunately it’s not the case for rarer conditions but I find there is always a listening ear.
The good thing about staying in hospital is, no one judges me if I am still wearing PJ’s in the middle of the day, or if my hair isn’t washed. It’s not important anymore. Priorities change. The most important thing about being in hospital is that I am able to go home again, with my child. Sadly, that isn’t always the case for everyone.
Being in hospital, can become a new “normal”. A new community of people. Some come, some go, and some come straight back again. So much time can be spent in hospital, when it is time to go home, it can be hard to adjust to not having the 24hr care. I start to miss the 8pm shift changes for the nurses. The 10pm observations, that for some reason has to be done so late at night, and all bedtime routines are thrown completely out of the window. The beeping of machines. The phone ringing at the nurses station and the nurses talking to each other in the middle of the night. Then in the morning, the consultants on their ward rounds. The smell of lunch and dinner coming from the catering trolley.
Things that I will never get used to are, the extortionate car parking charges and the expensive Costalotta coffee. The wait for my child to come round from an operation, or the agonising heart break of taking her down to theatre, and hearing her screams.
The best thing about staying in hospital is, after an extremely stressful and emotional day and when my daughter is asleep. I sneak out of the ward, usually the early hours of the morning. Go to Costalotta and buy the biggest hot chocolate with whipped cream, marshmallows and chocolate sprinkles. I feel naughty, daring and without responsibility. It’s just the best feeling in this surreal hospital world…. ever!
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