Trans-Pyloric Tube Insertion: Day 2

Ding! Round 2.

Back at the paediatric ward for the second day in a row, we met up with the helpful doctor form yesterday plus the nurse who would accompany us to x-ray. Her trolley was full to the brim. When I spotted the oxygen and a defibrillator I wasn't exactly filled with joy but hey...as my good friend would say...better to have it and not need it than need it and not have it.

We all decided that sedating Frankie was the way to go so a dose of chloral hydrate was ordered. The doctor told us a funny story about one kid who she had seen this drug have an opposite affect on. They got hyper instead of sleepy. With Frankie already crying thanks to simply being back in the hospital, the doctor's story went in one ear and out the other. We were too busy bopping Frankie up and down, trying to convince her that the people in masks weren't about to do horrible things to her. Soon, we were on our way through the back corridors of the hospital to the 'Interventional X-ray' department. We landed in a waiting room and I immediately knew I'd been there before...Frankie's barium swallow test back in February. We really do know every damn corner of this hospital.

As we waited for the chloral hydrate to kick in we were taken into a quiet corner. They pulled the curtains to make it dark and pointed us towards the reclining chair. Frankie was meant to just settle in, nice and calm. Only...she didn't. The drug kicked it and we were essentially left with a drunk who had downed 15 red bulls. She seemed to lose control of her head and neck, couldn't sit up on her own and was generally...floppy. But at the same time she wanted to be in 8 different places at once. It was like trying to wrestle a wobbly, greased up piglet for half an hour who was chewing her empty mouth like a twenty-something in a dark club. She squirmed around in our arms like one of those wacky waving men at a car yard, wriggled around in the chair and then on the floor of the hospital. Plus, she had lost a sock, so the whole 'drunk on a bender' persona was complete.

The lady from yesterday's x-ray experiences came and took us through and soon seven adults stood in the x-ray room trying to calm Frankie down. She knew where she was. Kids songs played and, without planning, all seven people 'stamped their feet' when the 'If You're Happy and You Know It' song prompted us to. Everyone really was trying to help.

Once things were organised and everybody knew their role, we lay Frankie on the X-ray table. Yesterday's radiographer informed the doctor that we would not be following protocol of 'one parent being present' today. She grabbed lead for both of us and Chris and I stood on either side, pinning down an arm and a leg each while the doctor stood at Frankie's head and threaded the trans-pyloric tube up her nose, down her throat and into her stomach. They used a wire to jiggle the tube around for 15 minutes or so, trying to get it to slip into the duodenum. Frankie screamed bloody murder the entire time. Tears streamed down her bright red face as she stared up at all of the faces around her, seemingly pleading desperately for someone to make it all stop. Eventually, the tube went into place. It was over. Two days' worth of trauma had come to an end. We made a quick stop at the paediatric ward to gather our stuff. By the time we left the hospital car park, the baby who never sleeps in the car, was asleep.

2 minutes down the road the car started shuddering. The radio turned off. The power steering went. The blinker started making a weird noise and Chris had to limp the thing home. Every set of lights had us wondering if it was going to conk out there and then. Handbrake on, Chris revved the crap out of it just to keep it going. We flew up the hill of our driveway in second gear. We made it...just. You really can't help but wonder if your friend is right...maybe your ancestors really did build a castle in the Scottish highlands on the burial ground of someone super important because the jinx seems very real at times.

A visit from Nanny and Grandad that afternoon was just what the doctor ordered for the kid who had been through the wringer. And now...we wait. We wait to see if she vomits this tube out of place like she did the first time it went in the day before. We wait to see if feeding into her duodenum causes diarrhoea or irritability. We wait to see if she puts on weight. We wait to see if less vomiting prompts her to eat or drink. We wait. On edge. Because every time she coughs, you can't help but wonder if that tube is about to come loose and cause us to do this whole thing again.