Yesterday we got the call that we’d been expecting and dreading. The date for Jessica’s next heart surgery. My world has shrunk to a few short weeks – a date in the calendar that I cannot see beyond. I know it has to happen. I know she needs this surgery, and that all being well, will have more energy as a result of it. Even knowing all this, as a parent, it is a scary prospect. For Jessica though, it is an adventure. It is a “sleepover” at the doctors.
She knows it is coming. She frequently asks how many sleeps there are to go. To her this is a positive step. And I am thankful for that. She does not need to worry about risks or what-ifs. Those worries are for us as parents to carry. She knows that she will feel poorly for a while after the surgery; that she will need a lot of time off school to recover. I have tried to be honest with her about that, without making it a frightening prospect for her.
This is Jessica’s first big surgery since she was a baby. This time she will be so much more aware of what is going on. All the tests and procedures, all the tubes and wires. Over the last couple of months, I have tried to prepare her for this and will continue to do so over the next three weeks. Here is how we have been preparing Jessica for heart surgery.
Writing a book about what to expect
Over the summer, I wrote and illustrated a book for Jessica all about her heart operation. This book is all about her. She loves the fact that the pictures in the book are clearly her and Sophie, and that her favourite dolly Kerry is nearly always with her. I have explained about how her heart affects her now and how the doctors are hoping to make her heart work better so that she has more energy to play with her sister. The story helps to give her an idea of what to expect – from having a look around the ward while waiting for a date, through to going in to hospital, having tests, being given medicine to make her sleepy and then waking up in intensive care with tubes and wires. I’ve tried to keep it simple and understandable for her.
Jessica loves her book. So far this seems to have been the most helpful thing with preparing her for surgery.
[Update: September 2018 – My “Jessica/Jack has a heart operation” book is now available to help other heart children prepare for surgery. You can download a copy here.]
We bought Jessica a Playmobil children’s hospital for her birthday. She loves small world play and has spent hours playing with this. There are various miniature items of equipment in the hospital that Jessica is familiar with and she loves playing that the Playmobil doctors are making the little children better.
Jessica loves her Playmobil hospital so much that she asked to take it into hospital with her. It’s much too big for us to take so I made a “children’s hospital in a box” for her. This is basically a clip-lid container with pictures of the inside of a children’s ward stuck inside the box. The box is the perfect size for a few of her Playmobil hospital figures and furniture which can then be stored in the container when it’s not being used for small world play.
We also have a toy doctor’s kit that Jessica has played with ever since she was a toddler. I love watching her and Sophie playing doctors and making each other better. A couple of the items in the kit are things that have been used on Jessica in the hospital, so this also helps her to become more familiar with them.
Practical ways of preparing
We’ve stocked up on button-up pyjamas (thanks to some lovely gifts from friends and family) and ordered a pair of wrap pyjamas for Jessica from Pyjama Fairies. Front-opening pyjamas are a must when trying to work around all the dressings, tubes and wires.
We’ll be encouraging Jessica to choose any toys or special blankets to take with her. I know that her favourite doll Kerry will be the first thing on the list! We also have a portable DVD player so she can watch her favourite programmes.
Having the book about Jessica’s heart operation has also been useful for helping to prepare Sophie. She can see herself in the story too which helps her to feel included in this process. We have talked about her having a sleepover with her auntie and cousins for a little while which should be fun for her.
Hopefully all these things will help with preparing both our girls for Jessica’s heart surgery. I’m conscious of trying to keep the balance of being open and honest without making it a frightening prospect. I hope I’ve managed to get the balance right. If you do have any tips though on any other ways to help prepare Jessica for her heart surgery, then please do let me know!