Hell Day: Frankie Raises The Stakes

We had thought that placing 4 new feeding tubes in 5 days had been the worst it could ever be. Frankie however saw us hovering on the edge of a nervous breakdown, waited a week and a half and decided to raise the stakes.

"I see you there on the edge of that cliff," I imagined her pondering internally, "let's see how you handle me vomiting my tube into my mouth four times in one day. Oh, and I'll throw in a trip to emergency, just because I can."

At 5:30am we woke to the sounds of coughing which, for Frankie, is a precursor to vomiting. I raced into her bedroom to watch her tube coil into and out of her mouth while she lay gagging in her cot. What a way to start a Saturday.

We had plans to go climbing and head down to Nanny and Grandad's place at Kirra for a swim. So, we loaded up the car with all of the necessary medical equipment required to reinsert a transpyloric tube and went anyway. I got to enjoy a 2 minute dip in the ocean which, in hindsight, would be the saving grace of a day about to turn to hell.

We inserted the tube but a quick attempt of getting a ph reading told us it was kinked. Out it came and in it went again. We pushed it in the extra centimetres required and went to work holding her on her side for 2 hours. No easy feat when she only slept for 30 minutes. At the 1.5 hour mark she pooped, we put her on the floor to change her butt, her head rested on the tube connection, she cried, and the tube came up and out her mouth.

I had been flipping between 'Nurse Lauren' mode and 'Crying and Sobbing I Don't Want To Do This' mode all morning. After another quick flip-flop we put the tube in, again, and started the 2 hours on her side...again. After much wriggling, many distractions and very little sleep we hit the 2 hour mark, celebrated and turned her feeding pump back to its normal rate. We had been through this process at home more times that we cared to remember and every single time, once we made it to the 2 hour mark, the tube had been successfully in place. We were about to find out that our run of good luck was well and truly over.

We headed out for burgers in the park. Frankie coughed, which of course led to a vomit, but this time it was milky. Really, really milky. The kind of milky that we grew accustomed to catching and measuring in a syringe 6 times a day when she was being fed with a nasogastric tube. Immediately we knew the tube hadn't moved into the duodenum. It was still sitting in her stomach.

We ran through theories, trying to disprove what we already knew to be true. The car ride home though saw another huge milky vomit and, about a minute later, the tube coming out her mouth while she sat pinned in her car seat. Number 3 for the day.

Once home we began the whole process over again. Our success in the past gave us hope that maybe, just maybe, putting her through the trauma again would be worth it when the tube slipped back into place. It didn't. More milky vomit ensued and we were on our way to the emergency department. We had no way to feed our child.

We were straight in and talking options with the emergency doctor. Essentially it boiled down to this...we give it one more try, do an xray to check if it's in place and, if it's not, Frankie would need to be put on a drip and admitted. Her blood glucose was already low. By this stage, this news didn't even upset me. I was so tired. So despondent. So disassociated that her words just floated on past me. But then...the miraculous happened. Our now favourite emergency doctor called in a big favour with a friend of her's. On his Saturday night off, an interventional radiologist and his theatre nurses came to the hospital to insert Frankie's tube under guided x-ray. We would be going home tonight after all.

It all happened really quickly from there. We were admitted to Short Stay where a nurse insisted on doing another set of obs, despite us warning her that Frankie was likely to become extremely upset. This little girl had had the hugest day full of so much trauma, not a lot of calories or hydration and was absolutely exhausted. Yet, apparently checking her blood oxygen took precedence. Before the nurse could even get a reading, Frankie vomited her tube up and out her mouth for the fourth time in 15 hours.

Up in theatre we donned the necessary plastic attire, plus lead aprons over the top, so we could go to theatre and a wonderful man could casually put Frankie's tube back in place. She had so little fight left in her by this point she just sobbed while we all held her down for the 10 minutes it took to jiggle a new tube into place. I was thankful that our new favourite radiologist had smuggled Chris in a back entrance so that we could both be there to comfort Frankie.

After a quick photo op at the request of our emergency doctor, who wanted to send the photo to her radiologist friend, we were on our way home. All we could do was cross our fingers and hope that the damn tube stayed put and thank our lucky stars that Frankie was so incredibly resilient. Surely this is the worst it can get.