Practical Information for during treatment

Here, we provide practical information, advice, hints and tips drawn from the experiences of families that have been through treatment and hospital stays.

Please check back regularly as we are constantly updating these pages, or if you have hints/tips that you would like to share, please feel free to contact us with your information.

If you would like to contribute or provide feedback on any of these areas then please contact us.

Hospital Stays

Staying in hospital is often tough for both parents and children. It is far from their normal environment, they don’t have their own things and it is often noisy and light through out the day and night. Following are some tips to try and make the stay as easy as possible.

Firstly, regardless of your child’s age, it’s worth keeping a bag packed in the car with the basics. You don’t want to have to go to the hospital with a fever or equivalent and not have some fresh clothes and the right toys for your child. You can’t always guarantee how long you’ll be in emergency so it’s best to be prepared.

Babies

  • Having a CD player with soft dream music is great for babies and other parents are usually very happy to accommodate low level gentle music.
  • Having a really strong sleep association tool helps as well such as a wrap, blanket, dummy, sleeping bag, etc. Follow the same routine that you would at home as best as you can.
  • Ask about any medications, obs, etc. that need to be done close to the time your little one goes to sleep and see if they can be brought forward a little to help uninterrupted sleep time.
  • Understand overnight obs and medications and how it will impact your overnight routine and any procedures you have the next day. Sometimes the nurses can be flexible to assist with your routine.
  • At times you will not have the opportunity to go through your normal bath routine. Start using a scented moisturiser/baby lotion at home during the bath process and make sure you take it with you to the hospital. You can use the scent that will help them know it is time for sleep.
  • If you want to know what is happening at your baby’s bedside, whilst you are in the lounge, having a shower etc, take your monitor with you, especially if you are in an isolation room. It might provide a little extra comfort that they are OK and you don’t have to be sitting next to them while they are trying to sleep.
  • Some babies are exceptionally inquisitive. If your’s is,  fix some baby blankets to the cot sides so that there is less for them to look at (you will need to ensure that they are fixed well so that they little one can’t pull them in on themselves). Double sided tape is a good tool to achieve this.
  • Some playmats with toys affixed, a.k.a. jungle gyms, can fit perfectly within the cot bed and can help entertain your child. It’s worth measuring the width of the cot and then going to a baby store to see what you can get to fit.

Older children

  • Having familiar toys/blankets etc can provide a great comfort to older children, so bring a few items that will help them feel a little less stressed.
  • Portable DVD player is a must with Hi5 and Wiggles or whatever your kids enjoy.

Parents

  • Sleeping by the bedside can be a fairly uncomfortable experience, but there are ways to help make yourself more comfortable.
  • Add an eggshell mattress (you can get one of these cut to size at Clark Rubber) to the pull out sofa to make it a more comfortable space. Cover it with a fitted sheet to keep it all together and then use the sheets/blankets supplied. Some parents even place the cushions from the sofa in between the mattress provided and the eggshell mattress for added comfort.
  • Use a blow-up mattress (they are comfortable and silent for the ups and downs during the night) – either one that fits within the fold out sofa, or one that sits on the floor. Two words of warning here though, make sure it is blown up prior to everyone going to bed as it can be noisy during inflation, and it can be cold on the floor so use an extra blanket. However make sure you check with your hospital.
  • If you are caught without any of your usual means, use the sofa cushions or a couple of extra blankets between you and the mattress and cover with the sheets/blankets provided.
  • Often you will not manage to make and consume a cup of tea/coffee whilst it is still hot. If you don’t already have one, and one is not provided to you, a thermos cup is an essential item to have with you at the hospital.
  • Headphones and your favourite entertainment device can be great to bring along. The nights and days can sometimes be long and with little ones sleeping it enables you to take a few minutes break.
  • Some hospitals have programs where volunteers will sit with your child whilst you run to the canteen, have a shower, etc. Ask your local hospital whether this is available and to which wards it applies.
  • Take your own washing powder and softener to wash your children’s clothes. This will avoid sensitive reactions to other laundry detergents.
  • Wash and repack hospital bag as soon as possible so that it’s always at the ready.
  • Buy or get a friend to donate wireless internet for you to use at hospital. It allows you to keep in touch with the outside world and family and friends.
  • Ask your family and friends to organise themselves for visits. It helps you get through the very long days. It’s much better to have 1 visitor a day, every day or so. Rather than having all of them in 1 day and no visitors the rest of the week.
  • Get girlfriends to keep magazines to bring in for you.

Central lines are also known as  CVL and Lumens.

Central  lines can be quite confronting when they are first put in. If possible, see if you can see a real life model who has a line beforehand.

It is important to remember that when it is first put in, it will look sore, a bit bloody and quite horrible, but it heals and will soon look much better. There are also other options such as portacaths and double portacaths however you should discuss these with your doctor to work out what will be better for you and your child.

Here is an example of a CVL in a 3 month old baby,  a few weeks after her line was put in. As the child gets bigger, the size of the line doesn’t change, so the line will look much smaller on a bigger child.

Important information about central lines and their care

  • Check the central line exit and insertion points on the body as soon as they have been inserted. The neck insertion points in some children don’t seal straight away and needed an antibiotic gel applied regularly. The body’s healing mechanism is reduced while on chemo so its best to get on top of this straight away
  • For highly sensitive babies, it is best to avoid scented bath oils etc. QV wash is a good alternative. But some oncologists recommend the lavender wash by J & J. Lavender is also a great relaxant.
  • For sensitive patients, use saline and gauze instead of the chlorhexidine sticks when cleaning the site for dressing changes.
  • Micro pore tape is great for sticking the Lumens to sensitive skin and it’s quite easy to remove too.

Helping to make the lines a little more comfortable
There are many ways that you can make central lines more comfortable for your child, and it will depend on your child and their age.

Babies

  • To help the lines not rub their skin you can sew a little sock of material and fix it at the top of the lines with tape. When they are learning to roll, having tummy time etc this assists in preventing the plastic clips from catching or digging in to them.
  • What ever you use, it will need to be easy to remove as you will need to get the dressing changed, and lines flushed each week.
  • To prevent little ones pulling the lines, it can be wise to put them in full piece jump suits, singlets or t-shirt suits that clip up at the bottom. This hides the lines when not in use and also allows you to feed them through between the legs when in use if that works for your child. If they can’t get to the lines they can’t pull them.
  • During treatment many people stick the lines to the back of tops so that they don’t get in the way, or so that they don’t become something to chew whilst chemo is being administered!
  • Some of the volunteers at the Childrens Hospital in Randwick also make little socks that go around the lines to prevent them from getting tangled. Ask around and you may be able to find someone who does this.

Older children
Details are still to be added here, so if you have any tips, please let us know.

Common issues with central lines

  • There are some common complaints with central lines, both after they are first inserted and subsequent accessing for cleaning and treatment. However, mostly they do not happen and it’s best to discuss these with your doctor or nurse.
  • The neck can be a bit stiff and sore after insertion –  immediately afterwards your child may appear to prefer looking in one direction over another.
  • Medicines can often feel cold when going through the lines.
  • The feeling can be unsettling when the lines are being flushed and used, but it is something that kids get used to quite quickly.
  • Changing the dressing can cause some anxiety for many children, but often babies have no reaction to it, other than they fact they dislike being held down.
  • There are many options with dressings, especially if your child is sensitive to any of them. Keep trying different options if one doesn’t suit. For very small babies the one-hand dressing seems to work well as it is a much smaller dressing.

Baths and central lines
Baby-having-bathsmlIt is important not to get the central line dressing wet and hence baths can be challenging.
Your choice will depend on your child and their age, but below are some ideas.

Babies

  • For younger babies the use of a layback bath seat is excellent (see picture below for one example available from Babies Galore). Fill the water part way up so the baby can feel their feet in the water, but it stays away from the lines.
  • For a little added protection you can also tape up the lines onto their shoulder and place a folded up face washer on top of the dressing to prevent any splashes from wetting it.

Older children
Details are still to be added here, so if you have any tips, please let us know.

 

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Neuroblastoma Australia
Ste 3, 165 Sailors Bay Rd
Northbridge NSW 2063
0406 991 606
info@nb.org.au
Neuroblastoma Australia Incorporated is a registered charity with GDR Status . ABN 74 173 375 414.