QCH Day 4: Tube Insertion Screw Around

Last night we dragged the cot mattress onto the floor and took turns, pacing the dark corridors, catching half an hour sleep on the floor, or laying next to Frankie on the bench seat. She was unhappy. We were unhappy. And it continued into the morning as the hospital slowly came to life. As we predicted, the Panadol just wasn't cutting it. She was miserable most of the day, sucking on her little arm non-stop as she tried desperately to comfort herself. Probably because her throat hurt. Probably because she hadn't been fed in 24 hours. Probably because she had two cannulas and the one in her foot was rubbing on her ankle bone so she couldn't stomp around like she wanted to. Probably because she had cabin fever. Probably because she was terrified that every person who walked past her was going to hurt her. It was a long day but I tried to soak in every moment of being able to see her whole face. This 30 hours would turn out to be the longest we have ever spent being able to see all of her face in 13 months. How fucking sad is that?

At 3pm we finally went down to x-ray to have her tube reinserted and, holy crap, it was horrific. Now, we've been present at more of these things than I can count. And it wasn't anybody's fault that today was worse than the others. But my god it was. For 20 minutes, TWENTY MINUTES, Frankie screamed and thrashed around on the x-ray table. Three grown adults pinned her down while another jammed 45cm of tubing and a metal guide-wire around inside her delicate insides. By the end of it, the snot and tears had mixed into one, the only benefit being that the dried blood blocking her nose since the scope yesterday was now smeared on her cheeks instead.

She returned to the ward more puffy-eyed and exhausted than I think I have ever seen her only to be told that the doctors had not indicated on her file that she should re-start her feeds once her tube was inserted. It may have been an oversight or it may have been that they didn't want to put her back on feeds straight away. It had been a gruelling 32 hours since she was fed. So...we fed our baby. We hooked her pump up and fed her. And she slept in my arms. A 2 hour sleep, unheard of for Frankie, was just what she needed.

The next step was getting her drip disconnected. Now that her feed was hooked back up, it seemed silly to be doubling up. But, that wasn't written in her file either. We had the nurse call a doctor for permission at 6pm only to be told that her high heart rate may be a sign of dehydration. The kid who had had a high heart rate since being in NICU at 29 weeks gestation. The kid whose heart rate had been high since she arrived 4 days ago. The kid who'd had fluids pumped into her non-stop for 30 hours. Eventually we hooked her up to a monitor and managed to snavel a photo of her heart rate dropping momentarily below their cutoff number so we could disconnect the damn drip. Finally we had a much happier baby on our hands. Besides, the feeding line plus the drip line were just way too much to manoeuvre around while trying to wrestle a tiny dinosaur.