Waiting for an appointment with one of her specialists.
Waiting for a therapy to begin.
Waiting for a returned call.
Waiting for a test.
Waiting for test results.
Waiting for equipment to come.
Always waiting for something. Always counting down the days.
And now we are on our biggest wait of all. Her open heart surgery. And it’s becoming really tough.
We found out at the end of May that the board of surgeons had agreed with Dixie’s cardiologist, that the best way forward was surgery.
We waited until the end of July to meet with the heart team. We were ushered first into a little room with one of the heart nurses. And even though he was a great resource of information my mind was blank.
I listened to him talk about how she needed to be given the ok from a dentist before they would operate. How if she got even a sniffle I would need to take her to the doctors, and call and let them know.
I listened to him talk about what clothes to bring for her, how she wouldn’t be able to wear anything that goes over her head.
I listened to him talk about all the tubes she would have in following the operation. How it might look scary to us. How she would have wires attached to her heart wall that would come out of her chest to act as a pacemaker should she need it.
I listened to him talk about Intensive care and how I wouldn’t be allowed to stay with her overnight on there. But that I would have a room in the hospital. Somewhere.
I listened as he told me that the first 24-48 hours she would be sedated but by day three she would start to be taken off everything.
I listened as he told me to rest in those early days whilst she was. To look after myself because I would need all my energy to care for her in recovery.
I listened to him talk about how to hold her after surgery. How to pick her up. How to practise picking her up this way at home.
As he talked and we listened, I felt like he was talking about someone else. I felt detached because the thought of her actually going through this was incomprehensible to me at that moment.
Finally her surgeon was ready to speak to us and we moved to another room.
She mostly talked about the mechanics of the heart and how Dixie’s wasn’t efficient because of the way the blood shunted through the hole.
She talked about risks. And success rates. She talked about the operation being 4-6 hours but could be anything up to 7 or 8. She talked about a 7-10 day hospital stay.
She talked about the operation wait time being up to 18 weeks, but generally shorter.
And now here we are.
Waiting for the postman every morning, or to get that call. We are all in constant limbo. Holidays have been cancelled and only last minute plans can be made.
For someone not going through this, I’m sure it’s hard to understand how it can consume you. How the longer you wait, the more time you have to think about the risks.
But ultimately we can’t prepare for it. So we just try our best to get on with our days and weeks. Even though it’s hanging over us all the time.
There’s nothing we can do but continue to wait…