Bright Ideas For Hospital Visits

This list has been compiled from families and individuals’ experiences with hospital visits, both emergency and planned, as well as drawing from many services that children’s hospitals now provide, such as hospital passports and top tip information. Please get in touch with any more tips you have or things that have worked for you or your family. This list is not exhaustive, and the most important thing is to find what works for you! We hope it gives you some ideas to help along the way

  1. See if you can get appointments put together or with all your different teams attending at once.
  2. Print off these little idea cards (link here) and choose what works best for you and your child.
  3. Create a hospital passport for your child or download one we have created (here)  you could also attach a photo, of your child.
  4. For any invasive testing try and stimulate as many senses as possible to distract, for example listening to music or singing while stroking a hand or they squish something like slime, and or smelling and eating something.
  5. Practice a relaxation and breathing technique with them every day – “imagine blowing up a balloon in your tummy and then seeing how far you can blow it away” or “deeply breathe in your favourite colour and slowly blow away a golden ribbon as far as you can”.
  6. Sweet treats – giving breastmilk or glucose prior to taking bloods has been shown to reduce pain in neonates -it will still work with chocolate and a 6 year old or 40 year old!
  7. Plan a treat for after you’ve been, it could be something big (a trip or toy or cinema) or small (seeing a favourite friend/aunty for cuddles).
  8. See what resources are available in your area, a visit to the lab and looking through the microscope at their own blood can work wonders.
  9. Age and development appropriate -use the language that’s right for them to explain what’s going to happen. There’s a good app Simply Sayin’ Medical Jargon for Kids which can help reduce anxiety.
  10. Use a comfort hold around them. Here are some amazing techniques from the Nationwide Children’s Hospital Website in America.
  11. Swaddling is great for babies and toddlers when suctioning or siting an IV.
  12. Create a special box they get at appointments or infusions, it could have special toys, pens, stickers, sweets, photos, star charts, whatever they like, but only get it out for those times. You could spend the first few appointments decorating it too.
  13. Headphones and music.
  14. Some kids want to watch and help, let them do as much as is appropriate, even holding equipment, it helps them take ownership.
  15. Play and practice on teddies or tots before you have to do it for real. Get a Medical kit or ask the hospital for a mask, bandages or blood tubes and let them have a go on you! Play lots and get really comfortable with it. Make it really exciting for them.
  16. Get the ‘magic’ cream for home, putting it on before will save time and stress.
  17. See if you can visit the ward before if it’s a planned admission, or see if they can send you photos.
  18. Don’t lie to your kids, no matter their age or development. Say “it will only hurt for a second like a pinch”.
  19. Let your child know it’s ok to feel scared or upset, they are normal feelings and they will pass.
  20. Learn breathing techniques and self care techniques for you too. If nothing else breathe in for a count of 7 and slower out for a count of 11. This will lower your stress arousal, lower your heart rate and blood pressure, allowing you to stay calm and in control. Being strong for your kid is hard, but know you’ve got this.
  21. See if your hospital provides advocates, sometimes it’s hard to concentrate and it’s good to have another person present to remember what’s been said.
  22. Write a list of questions before hand, and don’t be afraid to take the time to go through them.
  23. Plan something nice for you too, know you are doing the best you can and be kind to yourself!!
  24. Pack a bag for emergencies.
  25. Use technology, take pictures on your phone of your kids meds so you always have the up to date information and dosage, take videos of them when well and unwell so you can highlight what’s happening.
  26. Pack an eye mask and headphones too – and don’t forget the charger!
  27. Get organised -have a folder with all their medical correspondence and letters helps.
  28. Appointments can be exhausting and overwhelming at the start, write down two things that went well and one thing you’d do differently next time.
  29. Write an emergency care plan with contact number on it for home, school or anywhere else.
  30. Use BRAINS, ask:

B – What are the BENEFITS

R – What are the RISKS

A – What are the ALTERNATIVES

I – What’s your INTUITION

N – What’s NEXT or What if we do NOTHING

S – Smile, ask for a SECOND OPINION or SCIENTIFIC RESEARCH

  1. Know you ARE the person who knows them the best, trust yourself and keep asking if it doesn’t feel right. Ask for a second opinion if you need too. Being their advocate also means taking a minute or two when you need to explain to healthcare providers what works best for your child.

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I think our child has Microcephalic Primordial Dwarfism. Can you help us?

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