After the day in the Cardiologists office, when we’d been told that Honey would be soon having open heart surgery, we were on ‘Operation Weight Gain’ – which was more challenging that we had hoped.
The nastrogastric tube was still causing Honey to vomit violently, and she could barely keep any of her high energy formula down. It was extremely painful to watch. And I couldn’t even hold her or wind her as she had to lie in a reclined chair while we poured the milk down the tube. Her big sisters wanted to touch and comfort her too – but we had to stop them for fear that it would cause her to vomit everything back up. As much as I wanted to take the NG tube out, we knew that it was the only hope we had of her gaining enough weight before her surgery.
Understandably all of this took its toil on Honey. She became a sad little girl, with no energy and in constant discomfort. As time went on, she began to detoriate and her breathing become more laboured. She was admitted to hospital four times in one month. And it felt to me, with every admission, there were new faces to whom I was expected to explain the complexities of Honey’s condition.
As my frustration at our situation, I decided that I had to become Honey’s specialist. I would spend night after night reading medical journals, joining forums and support groups. I found great solace in a local group on Facebook – the ‘Heart Families Southwest’– made up of parents of ‘heart warriors’. I quickly learnt all the medical terminology – something that has helped me to have frank and educated discussions with Honey’s doctors.
Throughout this process, despite the worry and fear, my strength as Honey’s protector grew. I began to ask that I only deal with those health professionals that had met her previously; I made myself known to the coordinator who booked the surgeries; and I rang the Cardiology Ward in Bristol whenever she had been admitted to our local hospital to make sure that they were fully updated. I wasn’t taking any chances that “a message will be passed on”.
In early February 2015, Honey was admitted to hospital with an upper respiratory infection. She was discharged but was still finding it huge difficult to breathe. As I watched her struggle to fill her lungs, I decided to call the Surgery Coordinator to chase up a surgery date. Surprised to hear that Honey had been back in hospital, the coordinator set a date for a week later.
I cried big, excited, scared sobs. We knew there was a very real risk that the surgery couldn’t go ahead (Honey could get ill, an emergency could take our slot or there would be no beds available), but I knew that we were out of options. Honey needed this surgery desperately.
Grace Brown
