QCH Day 1: An Unexpected Extended Brisbane Stay

We had an outpatient appointment scheduled at the children's hospital in Brisbane so decided to make a trip of it. An Air BnB, takeaway pizza, catch ups with friends...our first night away as a family of three (months of nights in hospital excepted).

Come Monday morning, our appointment with the gastroenterology team started well enough. Until a simple act of listening Frankie's chest with a stethoscope ended with her vomiting her tube out her mouth. They really were getting the full Frankie experience. The head doc came in and started by giving me a hug. I'd burst into sobbing when the tube had come out. While Frankie toddled around holding onto chairs and the hands and legs of those around her, chatting away happily, it was decided that she would be admitted and scheduled for a gastroscopy (camera down the throat).

I had full faith in this new team. I mean, the doctor had hugged me for god's sake. And, more importantly, looked into my eyes and told me he would help us. He told us not to insert the tube ourselves. That he wanted to do it under guided x-ray. He stressed the importance of getting it deep into her small bowel and getting a good look at her anatomy while they did it. And so we listened. We let her go five hours without feed or fluid. Because we trusted them. Because when they said getting her into radiology wouldn't be the shit show it had been at the Gold Coast Hospital, we believed them. And then the trust all went flying out the window when their lackey arrived to tell us radiology was a no-go and we'd need to do the tube ourselves. She'd missed out on 5 hours of feed and, on top of that, they were going back on everything they had said about the importance of an x-ray insertion. I was furious. But also exhausted as we sat outside the ward waiting for a bed to even become available.

Eventually the nurse had an attempt at putting the tube in but, as is so often the case with Frankie, it kinked. When she pulled the tube out to try again, it was covered in fresh blood. That is 100% not normal for Frankie. But, what choice did we have. We grabbed another tube, switched nostrils and tried again. Which is absolutely ridiculous to think back on. Not because it wasn't the right decision, but because this is the shit we hold our daughter down and put her through. An hour and a half nap on her side and an x-ray had us pretty sure it was in. We'd seen enough of these over the radiologist's shoulder by now. We gave up on waiting for the doctor's confirmation, started her feed and I headed back to Aunty Fran's house to get some sleep. Only not long after I arrived Chris informed me that, while the tube was in, they wanted it further in. So, at 9pm, an exhausted Frankie had her tape removed, tube pushed further in, tube re-taped and x-ray number 2 for the evening before everyone could finally head off to twinkle twinkle land.