I feel your pain. I am a hospital Mum. Miss PPP was born with multiple (but largely fixable) medical conditions. We’re regulars in some of London’s top hospitals. While we wish it were otherwise, we’re now veterans of life on a hospital ward and all that entails.
If you’re facing time on a ward with your child in the future, or you’re reading this because it’s 2am and you can’t sleep because it’s too hot on the ward, you’re overtired and hyper vigilantly watching over your child; I hope some of this information and the Hospital Daily Log helps. The Hospital Daily Log was something I created after our first time on the ward. That first time I was far from home, suffering from baby brain and newly post op from an emergency c-section. People were asking me and my husband questions we had no answers for and I could remember nothing…and no-one. My inability to take charge, or control anything (even information) added to an already stressful time.
The next time we were in hospital I was determined that the situation would change. Knowledge, after all, is power. I couldn’t control what was, by necessity, happening to my child surgically; but I could keep track of things so ‘I’ knew what was going on and could present facts when someone asked. The Hospital Daily Log helped me detect patterns in Miss PPP’s pain, her temperatures and bodily fluid outputs (she had a colostomy at the time). Seeing patterns, being an ACTIVE participant in her care, restored some confidence at a time when I felt deeply uncertain.
In addition to the Hospital Daily Log, you will find information below that may help if you’re facing hospital time.
Some of this information may be useful, some may be surplus to requirements – but these are things we learned as parents entering a hospital environment. Not passing them on seems almost criminal!
Trying to remember everything and everyone while your child is in hospital can be excruciatingly hard. That’s why this daily log was created. Write everything down! It’s much easier than trying to remember who is who in the hospital zoo, what tests are being ordered and why. A notepad and pens also come in handy so you can keep track of important details. Write down your child’s nurses names, what shift they’re on. Ask consultants for their card, keep it handy – you WILL have questions later on and knowing where to go to have those answered is key.
Don’t limit the writing to the day to day surgical/medical/therapy; write down how you’re feeling, write letters to your child, share the things you’re feeling. Time spent in hospital is a really hard time, processing what’s happening can be tough. Sometimes, just getting it down on paper makes it easier to process.
I mean this in the nicest possible way, but….use your nursing team.
Nurses are wonderful people, they will advocate for you, help you, comfort you, keep you sane and tell you when to worry and when to relax. I have lost count of the number of nurses who have handed me tissues and hugged me as I left anaesthesiology when Miss PPP has ‘gone under’ for an operation. Please, ask them ANYTHING you think you need to know. They honestly don’t mind. If you’re not sure what a machine does or why your child needs it? Ask them to explain, they will take you through it. If you’re not sure you remember what they said the next day? Ask them, they’ll explain it again. Most of the fabulous nurses we have dealt with have said they’d rather explain something 500 times, than know you’re sitting there terrified and feeling lost. If you’re frightened of leaving your child alone while you take a loo break or have a quick shower, ask them to keep an eye on your child while you do that if they can’t – they will tell you.
We live in the information age and it can sometimes feel like you’re under siege from well-intentioned friends and family when you’re in the hospital. They really just want to support you and know how your child is doing, but it can be wearing; particularly if you’re in there for a few days (no-one sleeps in hospital…especially parents!).
Delegating one person to tell everyone else what’s happening is a lot easier than trying to let everyone know yourself. Use your social media accounts (like Facebook or Twitter) to update, but make sure you advise people that you likely won’t receive notifications once you post the update. We found setting up a ‘Secret Group’ on Facebook of friends and family specifically for updates was a life saver. It means that ONLY those people in the group will receive and see updates you send from the hospital – you can then post sensitive information and/or pictures without worrying about other people being upset over it. People will want to know what they can ‘do/send’ to make life easier, so think about what you need and write a list. I know it sounds cheeky, but send the list to your main contact so they have it, in case they’re faced with the inevitable ‘I feel so helpless, can we do anything?’ request from people. Think of this as a win/win. People will be able to show their love and support for you, and you are in with a shot of getting things that will be useful on the ward rather than 11 helium balloons, chocolate, and stuffed animals.
Phone reception is generally pretty horrible in hospitals, but people can sometimes buy your TV and Phone services while your child is in the hospital! If someone wants to do something for you or asks what you need and you’re at a loss – ask for TV and internet access. Turn on your bedside TV screen and take a picture of the information so they can see who your provider is. You can sometimes put money on the television directly from the providers’ website. You’ll usually need to provide the ward and bed number, hospital name, child/patient name and sometimes their hospital number. Most hospitals have screens that also become the phone system; when you set up your internet on that system by putting money on that account, you will get a direct dial phone number – give people that number to contact you on and while they are waiting for the phone call to go through they will hear a message that says ‘You can provide internet for your loved one, call (or press this number, etc) and speak to our operators’ – this is the EASIEST way to put money on the account. Also, if you’re going to be in there a few days, or they don’t know long your child will be in for ALWAYS go for the weekly phone and video package if you can. Extra movies, internet, it makes long waits a lot easier and the balance of the account can be transferred if you move rooms.
Your bedside TV can sometimes charge your phone AND keep your laptop hooked to the internet! Look at the back of your bedside TV; you’ll sometimes see USB ports sneakily hidden away (sometimes they’re facing downwards). We have charged phones from USB leads, run small speakers from these and even plugged in a USB drive with Cbeebies shows on it for Miss PPP. This can be a lifesaver when your phone or other items are running short of charge.
I know it’s hard. It’s noisy, there are people coming in and out every few hours doing obs, and sometimes your child just won’t sleep. If your child is not hooked to monitoring or meds, try walking the hall with them. There are wheelchairs and special pushchairs you can use for this, or if your child is small enough to carry, then a change of scenery and a few quiet moments alone can be all they need to get to sleep. When it comes to your sleep, it’s a lot harder. We know you’re exhausted, you’re stressed and you don’t think you can sleep – but you NEED to. Try using a body wash with lavender oil in it. By all means, wash with it, but sometimes just washing your face and hands before bedtime, popping a drop under your nose (sounds insane but it works), on a tissue on your pillow or put it on a tissue and wipe around the chair bed with it…it will help. It’s not a miracle, but the soothing scent helps to relieve some of the tension and does ease your sleep a little. (Unless you loathe the scent of lavender, in which case any scent you find comforting will work.)
I don’t care who you are please don’t be afraid of crying. Honestly. This situation is hard, scary and traumatic! There are few times in your life when you feel LESS in control than when your child is in hospital. Shower time, loo breaks, and the dead of night when your child is asleep…all perfectly viable crying times. Releasing some of the fear, anxiety, and anger is not only a good idea, but it also keeps you sane. Everyone needs to decompress.
Wipes, Deodorant & Dry Shampoo – the hospital parent’s cleanliness trinity. Despite your good intentions to shower before your child wakes up, there will be times when it seems like a shower will seem like ‘something you used to do’. More common is that you’ve had a bad night; the consultants are about to do their rounds and you look and feel like you’ve been locked in a hot hospital ward for two days. It’s those times that you will LOVE wet wipes and deodorant; they take you from gritty and grotty to relatively clean and pulled together in seconds. They’re not a miracle, but they come really close!
Dry shampoo is a modern wonder. One large bottle means clean feeling, refreshed hair – and makes waiting another 12 hours for a shower just that little bit easier to bear. No dry shampoo? Try talc; just brush it in a lot so it blends in!
While your child will be well cared for with meals and fluids during their stay; parents are generally not. Cups, Plates & Cutlery – you may not need these, depending on the hospital you’re in; but in three of the London & Essex ones we’ve been in, there was nothing in the kitchen for parents to use. Plates need to be microwave safe. I loathe microwaved food, but trust me sometimes just being able to have something bedside, hot, cooked, without having to traipse any further than the parent’s room kitchen is exactly what you need.
Milk is like gold in children’s wards and sadly it’s the first thing to be taken by other people without asking. That’s why coffee sachets with milk and sugar and those UHT milk portions are life savers! I know they’re not anyone’s first choice of beverage, but for practicality, portability and ease of use they’re your best friend when dragging yourself to the cafeteria 4 floors and 17 corridors away is the next best option. Keep snacks for emergencies; products with oats and sugars in them are great energy fuel and they’re just there to give you a little something if you miss being able to get breakfast, or if you’re in the early surgery queue and you’re spending the morning camped out in the post-op waiting room with nothing to eat and no time to go anywhere. Even those hideous noodle snack pots (yes I know, again not everyone’s idea of cuisine), but at 3am on the day from your nightmares when you’re dog tired and haven’t eaten in 19 hours, a top chef would be hard pressed to provide something more appetising. In short, they’re a necessity; a real ‘In Case of Starvation, Break Seal’ food, they store really well in the hospital drawer and, in a pinch, are great for occupying the stomach of any visiting teenager and/or handing over to another desperate starving parent!
Organisations Who Are Here to Help
Services you may not know about. Children’s hospital care was a revelation and a real learning curve for us, sadly our experience was not unique. So, if no-one has told you already, there are a few wonderful services available to parents spending time in the hospital with their child.
The Sick Children’s Trust: http://www.sickchildrenstrust.org these amazing people understand what it’s like to have a child in the hospital. They provide homes close to hospitals across the UK where parents (and siblings) of children in hospital can stay, free of charge for as long as your child is in hospital. This is particularly helpful if you have come from another part of the country for your child’s treatment – the SCT will try and find room for your family so that treatment doesn’t mean separating from everyone you love for days, weeks or months. The great thing about the SCT Houses is that they are impeccably clean, you have your own lockable bedroom with securable closets, lockable kitchen cabinet, fridge and freezer space, cooking facilities, bathrooms with disabled facilities, toys for younger kids…basically, they’re a safe/soft place to land while it feels like your world is falling apart. They have phones in the room that can connect directly to the ward your child is on, so if you’re tag-team parenting with one sleeping while the other is bedside, it can be an absolute lifeline. Sometimes just being able to do laundry, have a proper shower and cry where your child can’t see you (yes, we all do it) is just what it takes to be able to go back and be ‘Super Parent’ at your child’s bedside again. You can reach The Sick Children’s Trust head office on 020 7931 8695 – but ask the hospital staff if they have a Sick Children’s Trust house close by for parents of children in hospital, they often know exactly where it is and can contact them for you.
Ronald McDonald House: http://www.rmhc.org.uk
A very similar set up to The Sick Children’s Trust, but supported by the team at McDonalds. Often hospital wards know exactly who to contact for RMH so speak to your child’s nurse and ask if there’s one local to you and how to access it. You can also contact their head office at 0844 840 0844.
Prems/Babies: If you’re facing time with your premmie or your child is very ill at birth there are some people who can help. The first (surprisingly) is…ASDA! They have recently brought out an excellent range of tiny prem clothing, it will work with the leads and wires your child may need right now and they’re seriously affordable! Go onto the ASDA website http://direct.asda.com into George Clothing>Baby and then look under >Collections for >Premature. Even if you’re at the hospital sitting incubator side, you can order the clothing to be delivered to your home (or any other accommodation) ready to be washed and brought back in for when your child is ready to wear them (always ask your nurse if your child can wear clothing yet before ordering anything).
This list is by no means exhaustive…it’s just a few things that may make hospital time easier.
I would be keen to hear from fellow hospital parents with their suggestions for staying on the ward. What helped? What didn’t? Organisations who offer support to family’s on-ward, charities and support groups would also be welcomed.