Trans-Pyloric Tube Insertion: Day 1

We didn't want a trans-pyloric tube. It would mean Frankie being attached to a feeding pump for 20 hours each day. The tube would go up her nose, down her throat, through her stomach, out the other side and into the duodenum (the first part of the small intestine). During our hospital stay back in February the paediatricians told us that it was drastic. A measure we didn't want to take if it could be avoided. Yet, 6 months later, it felt like our only option. Drastic times call for drastic measures. And a baby who is almost 11 months old, 6.2kg and in the 1st percentile...it had gone on long enough. Today was the day.

At 7:30am we arrived at the Paediatrics Ward and were taken straight through to a four-patient room, the Day Stay Unit. We knew which bed was ours thanks to the bright yellow cot that we recognised from our previous two-week stay.

The nurses got to business quickly. We removed the old naso-gastric tube and, with Frankie screaming on her back, they went to work putting in what would hopefully become our trans-pyloric tube. On insertion attempt number 1, Frankie stopped breathing and the whole operation was aborted. By insertion attempt number 2, Frankie was so upset she was vomiting up froth. Regardless, they shoved 40cm of tubing down her throat. 28cm gets you to her stomach. The extra 11cm should put enough extra tubing in there that nature will be able to move the weighted end through to the duodenum. With Frankie now screaming, vomiting and thrashing around, the tape-job to keep the tube in place was less than ideal. We patched it with two additional pieces and hoped for the best. Now came the hard part...keeping a rowdy 10 month old on her right side for 2 hours while you slowly pump formula down the tube to encourage the body to move it to where it needs to be. Only an x-ray would determine whether it had worked.

Down at Medical Imaging, Chris kindly offered to don the lead-suit so he could be with Frankie for the x-ray. He reminded me that I'd had quite enough radiation thanks to the stupid number of MRIs I've had over the last 4 years. Cancer...the gift that just keeps giving. Chris and the radiologist held Frankie down while she, again, screamed, and they took an x-ray. Chris swiftly picked her up as soon as it was over only for her to vomit a thin, yellow liquid all over the floor and for 15cm of tubing to loop out her nose thanks to the crappy, insecure tape job. We knew immediately that the tube had come out far enough for the whole endeavour to have been a waste. The x-ray popped up on the screen as if to taunt us. Before her vomit, the tube had indeed been exactly where it needed to be.

Despite the radiologists panicking and telling us not to touch the tube, we pushed it back in. This wasn't our first rodeo and a loop of tubing sticking out her nose was our day-to-day. A nurse arrived and we all agreed that, despite it being a long-shot, we'd do another x-ray to see if it had slipped back into the intestine. This time though we threw my radiation exposure to one side, along with the radiographer. Chris and I both wore the lead suits, everyone else left the room and we held Frankie on the table for x-ray number two. The end of the tube, instead of making its way into the duodenum, had looped back up towards her oesophagus. Back to the day-stay unit we trudged.

There was talk of sedating Frankie and trying the whole thing again but the doctor decided that, thanks to the weighted end, the tube may just sort itself out. It had done it once, making its way into the right spot, so why couldn't it do it again? This time the instruction was to keep her upright for two hours so gravity could work its magic.

Afternoon arrived and we were back at Medical Imaging once again. The x-ray technician led us into the room where, this time, she had two lead suits laid out for us. She left Chris and I to it. X-ray number three showed that it must have been a low-gravity day...the tube was in an even worse position than before, now heading back up her oesophagus. Back to day-stay we went.

Sedation was back on the table. Only, with the tube sitting at a weird spot inside her, Frankie would need to take the foul medicine (which they had mixed with apple juice) orally. "It's only 5ml," they said. I told them that Frankie hadn't taken 5ml orally in 6 months or more. Yet, we tried. Needless to say, squirting a syringe of foul medicine and apple juice into her mouth didn't go well. We bit the bullet and decided to forgo the sedation, partially pull the tube out and attempt to reinsert it. First though, we needed to remove the patchwork of tape holding it in place. That was traumatic in itself. With Frankie again screaming on her back in that damn yellow cot, they pulled the tube almost all the way out, and reinserted it to the 28cm mark. It should have been sitting in her stomach but they couldn't get a ph reading to confirm it. Out came the tube again. This time I watched as they pushed in the full 40cm before trying to get a ph reading. Through Frankie's screaming, I pointed out to the nurses that they had gone in too far to be checking for a ph. Out came the tube once again. All the while Frankie thrashed and screamed and we held her down. Eventually they gave up on getting a ph and just shoved the 40cm of tubing in.

Another two hours of keeping Frankie on her side ensued. In the midst of all of this, I realised our online grocery order had been delivered. There were immediate flashbacks to the day I was diagnosed with cancer and, on the way home from the doctor, we had to stop and pick up our grocery order. Because even when life is in chaos, the mundane stuff still needs to be dealt with.

Back at x-ray the receptionists gave us looks of pity as we stood defeated before them. It was 4pm and we could barely keep our eyes open. We were shadows of the bright-eyed family who had stood there at 8:30 that morning. Battered and tired but with a very small glimmer of hope shining from our eyes that maybe, just maybe, things had worked this time. We donned the lead and Frankie was incredible. She lay on that X-ray table for the fourth time today and barely whimpered. It was over before we knew it.

I heard the radiographer on the phone to the doctor before she had a chance to talk to us directly. The tube, instead of being in the small bowel, had looped back up and was almost in her mouth. How she wasn't coughing and spluttering the feed that had been going in for the past hour and a half was beyond me. I dropped to my haunches. It had all been for nothing. The trauma, the exposure to the radiation, it was for nothing.

As we walked out of the imaging department, heads down and me with tears in my eyes I heard the receptionists call out to ask if things had gone ok. It was as if they were echoing from somewhere far away. I couldn't even bring myself to acknowledge their kindness. Back to day-stay we went where we removed the tube and somehow, after everything they had been through, Frankie and Chris rallied.

She played in her cot with syringes, ph strips and hyperfix tape, winning the hearts of all who heard her giggles echo through the corridors as Chris blew raspberries on her hands. After a 10 hour hospital stint, he still found the energy to entertain his girl. Chris is a quietly spoken man who spends his life being told to 'speak up.' When it comes to his baby girl though, he will tell anyone and everyone what is best for Frankie. He's not afraid to be bold, to offend if need be. And as a people-pleasing introvert, I bloody love him for it.

The corridors grew quieter as the evening drew on. Nurses consulted with doctors while Frankie grew more and more tired. If they couldn't get a radiographer to do the insertion of the tube under a guided x-ray tonight, we'd need to put an NG tube back in and go home with Frankie vomiting every feed until someone could do the new tube in a week's time.

Eventually a doctor who knew us from special care arrived to tell us the news. It was 5pm and nothing would be happening tonight. She had contacted numerous heads of departments on their private mobile numbers to try and find someone who could put the tube in tomorrow. People really did feel for us. They were doing what they could to get things organised. We packed up our things and left...broken.

First to arrive and last to leave. We came with a nasogastric tube with the intention of leaving with a trans-pyloric tube. Instead, we left with no tube at all and a baby traumatised even further by the worst of her hospital experiences to date. This kid has had more blood tests than I can count, more feeding tubes inserted than I care to remember. Her eyeballs have been ultrasounded on multiple occasions, there have been numerous other eye-tests, a brain ultrasound, a hearing test a barium swallow under x-ray. And let's not even get started on the bazillion OT, physio, dietician, speech therapist and paediatrician appointments. But today...today was the worst day.

On the way home the doctor rang to inform us that they had rejigged rosters and moved people from one hospital to another so that Frankie could have her tube inserted the next day. Round two was scheduled.

We arrived home with our eyeballs hanging out of our heads. But instead of being able to give our brave baby a cuddle and rest, we instead lay her down and shoved yet another tube down her throat while she screamed. She had had 40ml of formula in 14 hours. She needed to be fed.