It is nice to take a cheerful rug for your bed.

Some times the rheumatology team will admit a child to hospital so that they can have access to several therapies. Seeing a child over several days also enables the team to get a better picture of how your child is managing.

Somehow it is always you who ends up having to carry everything back to the car so don’t be conned into taking half the bedroom. There is very little storage at the bedside.

There are only a couple of basics you really need to pack-

• Casual clothes – undies, track pants, t-shirts, jumper (some kids sleep in casual clothes too)
• Swimmers (for hydro)
• Toiletries bag- shampoo, soap, comb, deoderant, toothpaste, toothbrush
• PJs
• Thongs
• Any assignments or work from school.
• Plastic bags to bring home washing
• Written list of medications and dosages (these will be supplied by hospital during stay)

There are a few useful things you can add but they aren’t essential-

• Book/magazines
• Note book & pen
• Dressing gown
• Slippers

Morale boosters you might consider-

• Favourite fridge food – yoghurt, lean cuisine frozen meals, snack/comfort food – have these labelled and put in a paper bag to reduce the chances of theft.
• Favourite cheerful rug or quilt for bed
• Favourite pillow case
• Parent stash – favourite cup, tea bags/coffee and bikkies/fruitcake -
  hide in the back of the wardrobe cupboard for sustenance during visits.
• Favourite teddy

Luxuries that only a few kids have. These are usually only relevant for older teenagers who are able to look after them. The laptop and mobile phone help them to keep in touch with their friends.

• *Mobile phone or phone card
• *ipod and ear plugs
• Laptop
• (Cable needs to be checked and approved by PMH safety sticker- staff will advise)
• Laptop security lead (To lock laptop to bed rail)
  *These will need to stay with your teenager to avoid having them stolen.

Bed photo thanks to bennylin0724 at Flickr Creative Commons.

Work out a crisis plan with your doctor.

There is something in the universal law of rheumatology that says that flare ups occur late on a Friday or on the week-end.

You have a child climbing up the walls, your whole household is on edge and Monday seems too far away.

The official advice is “if you are worried – go to emergency”.

You know emergency means having to wait for hours depending on how busy the department is. It also means exposing your otherwise well child to other children with a cold, virus or flu.

If the staff do admit your child, and a bed is found, you may have another long wait until your child can go to the ward. Once on the ward not a lot can really happen until your child sees their specialist.

Even so, there are times when we have chosen to do it anyway. There are times when the pressure of managing gets too much. What you do need to remember is that going to emergency may not make things better and in some cases you might actually come away exhausted and feeling pretty horrible.

An emergency department is a place to deal with medical emergencies. If you are caring for a child with chronic issues you should try to avoid going there unless a doctor or liaison nurse tells you to go. These people are highly trained specialists in dealing with a medical emergency. They are not resourced to deal appropriately with a management crisis which is more the domain of the rheumatology team.

It is a good idea to discuss a crisis plan with your doctor. For example, if it is appropriate, they may give you a medication chart for normal days, one for worse days and one for a really bad/new flare up on the week-end type situations.

Have your Crisis Plan in writing somewhere you can find it. Have a medication cupboard stocked with what you will need. This will probably give you confidence to cope with a week-end flare up until you can consult with the rheumatology liaison nurse on Monday morning.

I sometimes worry that I could miss something else going wrong and not respond appropriately. In the past I have also used these strategies;

• I take my daughters temperature as a reality check.
• I have also called a 24 hour health advice line Health Direct at 1800 022 222 to go over my plan.

Having said all that parental instinct is still the best guide – as the experts say “if you are worried – go to emergency”.  This applies when your kids are young.

No teenager, with experience of the routine, would choose to go to hospital on the week-end unless it is really necessary. These days we let our daughter make the call. If she needs to go to emergency she says so and we go.

We will probably just get sent home after a few hours – but that is not the point. It is a reality check for her and sometimes it is still necessary.

What do you do in these situations?

Crisis photo courtesy of Celine Nadeau at Flickr Creative Commons.

Having your own mug and some nice tea can be comforting.

Whether you are a constant bedside parent or a visit after work parent you can do several things that improve the hospital stay experience for you and your child.  I don’t always have the energy to do these things but I know they work.

Supplies
Leave you and your partners favoured coffee mug along with your favourite teabags or coffee in a bag in your childs cupboard. You might also bring a plastic container with your preferred biscuit or fruit cake, nuts etc.  Take time to make yourself a  good cuppa and sit back and enjoy it. Remind yourself to relax.

Learn and Use Other Patient Names
All the kids have their names on the wall beside their bed.  As you enter and leave the ward say hello and goodbye to the other kids by name.  ”Hi Michelle” ” “See you later Jo”.  I have found that this simple process helps the kids learn each others names and acts as a bit of an ice breaker on the ward.

Learn and Use Nurse Names
I use the staff names in front of my child.  If a nurse delivers a medication, I notice the name tag and say, “Thanks Kevin.”  It encourages your child to do the same.  Kids who are polite and appreciative are more likely to be chatted to by staff.  This also means your child is more likely to ask for assistance if they need it because they know who their nurse is.

Acknowledge Other Parents
It is easy to acknowledge other parents without being intrusive.  Most parents are very tense – don’t be put off – be friendly anyway.

• If you are making a tea, offer to make them one too.  Some people find it hard to leave their chid.
• When you have finished with a magazine or newspaper offer it to another parent.
• If you are off to the shop ask around and see if anyone wants supplies.
• Give a nod of acknowledgement as you come and go from the ward.

I have found the process of learning names and acknowledging other parents makes an important difference.  Somehow it makes it easier for other parents to comfort or assist your child when you aren’t there.  This might be a simple thing like opening the high security plastic in the little cereal boxes.  It might be something major like noticing your child is distressed and alerting staff.

Coffee mug photo courtesy of radiant guy at Flickr Creative Commons

Flying solo on Ward 17

In some circumstances I really did need to be there. I didn’t get much sleep but I was needed.

Once she turned thirteen she was admitted to Ward 17 where things are a little different.

As the ward is for teenagers, parents are not really encouraged to stay. This particularly applies during routine admissions.

At first it is very difficult to leave her there alone. We got late night tearful calls. I remember this as being a very stressful time for the whole family.

I was desperate to get a good nights sleep. At the same time I felt awful leaving her there alone. I’d often ring the ward and ask the nursing staff for reassurance. They were very understanding.

After a short while, our young teenager started to make friends with the other patients and join in their activities like Club Ado. It is a great feeling to see her independence and confidence develop.

There are a lot of benefits that come from mixing with other teenagers who have battles of their own.  Sometimes my daughter has told me that she thinks other kids have a harder time than she does. I think there is considerable benefit in having this sort of perspective.

Staying by herself also means that our teenager learns to ask for and receive assistance from other people.

This is a helpful development during a time when she, like most teenagers, increasingly disregards most things we have to say.

Nursing staff and fellow patients can play an important positive role in helping her come to terms with managing her own health.

Once I got used to it, I did start to enjoy my daughter flying solo on Ward 17.

So if you are negotiating the transition to Ward 17 let me say – “If you are going through hell, keep going.” You will enjoy it when you get to the other side.

Photo courtesy of Lip Kee at Flickr Creative Commons