Big Baby Steps

It’s no secret that I’ve been up to my eyeballs in bureaucratic frustration for the past few weeks. Feeling like Nyana is getting the short end of the stick as the NICU staff bicker amongst themselves about whether or not high-flow respiratory support has any credence whatsoever, and whether or not we should let her try to bottle-feed again while on high-flow. With every new face and every new proposition for care, I keep on just trying to get the point across that I don’t really care how we get there, I just need a cohesive team all working from the same playbook, with a clear plan of attack that all parties agree to adhere to. I may have finally squawked enough.

It started about a week ago, with the charge nurse coming to visit me during a sleepy cuddle with Nyana. We got to talking about how Don and I were holding up and it came out that it’s getting tiresome to introduce ourselves to everyone we meet. Trajan’s dad used to joke that there are more than 200 nurses employed in the unit, and the system seems hellbent on making sure we get to know each and every one of them. She nodded as she agreed with our frustration and admitted that it had been an issue in the nursery for a long time. But unlike everyone else who had shrugged it off with, Ah well, it’s always been like that. What can you do?, she said she was going to make it right for us.

I noticed that we’ve had the same senior doctor in rounds for the better part of a week now. I mentioned in an earlier post about having to explain to yet another doctor what he could have easily found in Nyana’s chart if he looked… I’ve come to learn that he’s one of the top dogs in the NICU. He seems to have a genuine interest in Nyana—every morning in rounds he actually comes into the room to look her over, as opposed to most who just conduct rounds from the hallway—and he includes me in the discussions with the nurses and RTs. He’s all for the high-flow and he’s all for feeding while on high-flow. He and I are going to get along just fine, after all.

Yesterday morning I was visited by a respirology resident who was familiarizing herself with Nyana so that we could have a more in-depth discussion today with one of the more senior members of her team. We agreed that any plan moving forward on Ny’s breathing issues needed to factor in her feeding issues, too, as the stomach and the lungs are so closely intertwined. Because any bottle-feeding trial requires the presence of the occupational therapist, the resident agreed that she’d make the arrangements to have the OT, as well as RT Awesome, at our respirology powwow in the morning. We set a time for 10am Tuesday, and I went back to my snuggling with Princess Chub, thinking about all the things I wanted to ask and discuss in our meeting.

Nurse Awesome was on shift on Monday night, and after a great night with Nyana, called us at home about an hour after we’d left the hospital. She had bad news for us: we’d lost our room with a view. A babe was quite sick—something going around, apparently—and needed an isolation room. We were warned back in December that we could lose our room if it was needed, but were promised that we’d be the last to be bumped. Sure enough, all four isolation rooms are in lockdown right now, and we’re in a new room, still private, beside the nurses station. I learned today that the “something going around” is RSV, a virus disguised as the common cold, that attacks the lungs and airways. I don’t think it’s any coincidence that Nyana was given her RSV vaccination today instead of upon discharge.

So I arrived at the hospital half an hour before my scheduled meeting with everyone, to acquaint myself with the new room. I barely had time to set my bag down before the respirologist came walking into the room. Half an hour early, and minus the OT and the RT. He introduced himself and I said hello to the resident I’d met yesterday, and then he took a quick look at Nyana. He explained to me that she has BPD, or bronchopulmonary dysplasia. He told me it’s a cystic disease, that it’ll be a long road to get her better, and that she’d likely go home on oxygen. No shit, Sherlock. Google and I figured that out back in October.

I was so irritated that that was the extent of the meeting I’d so been looking forward to. What happened to the big powwow we’d talked about yesterday? At 11:00am, an hour after our meeting was meant to start, the OT stopped in, thinking she was right on time. Despite the obvious communication breakdown behind the scenes, she and I had a good conversation about Nyana’s ability to take a bottle while on 6L oxygen. The feeding study that has been talked about for weeks has finally been scheduled for the first week of March, and the OT herself sat Nyana down this afternoon to take a 20mL bottle orally. As she had back in January with our first feeding trials, Nyana took the bottle like a champ, and even impressed the OT by stopping on her own to pace herself. We’ve now been given the OK to bottle feed 20 millilitres, twice a day, until the feeding study next Tuesday tells us more. Coming from the OT this time, it won’t get overruled.

Rounds happened around noon, followed by a visit from RT Awesome around 1:30. It had been suggested in rounds that we switch Nyana to low-flow today, and while the RTs didn’t want to do that just yet, they did agree that we needed to see how well she could breathe on her own, now that she’d been working for it on high-flow for eleven days. Whereas two weeks ago on CPAP we took her off support and there she stayed for 90 minutes, today we didn’t even get ten minutes without her prongs. Far from a textbook case, the jury is still out on whether or not Nyana is pressure dependent or oxygen dependent.

Despite her inability to sustain her high scores while off her prongs, we decided to test her again, this time keeping her on support but weaning her from 6L/min to only three. We kept her here at 3L/min for about ten minutes, not noticing any significant change in any of her stats at all. We noticed some slight head-bobbing, which is an indication that she’s working to breathe, but overall her numbers all looked OK. We made the decision to wean her one litre at a time, every three or four days. Because Nyana was scheduled to get her RSV shot this afternoon, the first wean down to 5L will happen Wednesday morning after shift change and we’ll aim for 4L by Saturday. After we get to 3L we can attempt the au naturel look again.

Everything that was discussed today—the feeding study and the allowances for oral feeding and the plan to wean her O2 slowly litre by litre—has all been recorded in her chart. Tomorrow we will have protocols printed and hung in our room so that all staff are on board with our plan. And assuming all goes according to plan, RT Awesome seems to believe that our plan for the end of April is comfortably realistic. If nothing else, I feel that as long as everyone can agree to play by the rules we’ve set out, I can let go of the frustration I’ve been caught up in and enjoy these last six, eight, twelve weeks before we finally bring her home. We made some big baby steps today.