We really have reached a point where we’re on Nyana’s time now; where there’s not much the doctors can do now to speed up her recovery, and all we can do is wait for her to grow into her lungs and let us know she’s ready to come home. But that doesn’t stop the docs from trying. Everyone from doctors to nurses to RTs to residents—and even the cleaning lady who chimes in from time to time— seems to have a different opinion on where we should go from here.
I know without a doubt that my daughter is getting the best medical attention possible, and given the choice I’ll take top-notch care over bedside manner any day. But the truth is, while the hospital has no problem excelling at patient care, they’re severely lacking in parent care. I’m not talking about providing social workers to help with financial aid or to host parent support meetings; that social support is there. But there’s not a lot of medical support for the families living day after day after day within the walls of the NICU.
No one sat us down the day we checked in to give us the lay of the land. We were assigned a doctor, which really only means that his name is the name on Nyana’s charts because he happened to be the one on shift when she was born. It took us a few days to figure out that we got a new nurse every day, every shift. It took more than a month to snag ourselves a primary nurse. It’s taken four months to finally snag a 2nd. (I thought I had one in December and she was never seen again.) Nyana has spent 256 nursing shifts in Vancouver’s NICU and Don and I still walk in some days to find a someone we’ve never seen before caring for her. The same goes for RTs and residents and more doctors than I can count. It’s frustrating.
It’s not that we don’t want to do the meet-and-greet every day and night. I’m certain every person we run into every day is more than capable of taking care of Nyana. But some consistency would be nice. I mean, how many times can I chase a nurse away who wants to chase Nyana’s oxygen? No, it’s OK. She’s only beeping at 86. You don’t need to turn her O2 from 23 to 30. How many times can I answer the question, “Is it normal for her to…?” Go three days without pooping? Yes. Puke during her feed? Yes, sometimes. Desat and pull herself back up? Yes. Nyana’s medical team is supposed to be giving Don and me the answers we’re looking for, not the other way around. It’s frustrating.
Over the past two or three weeks, I’ve been so turned around in the hospital’s little game of he said / she said, I don’t know who to believe anymore. A few days ago my day nurse told me not to bother weighing diapers anymore (yes, weighing diapers… welcome to my world); just hours later the night nurse wanted to know why I’d tossed it before she’d had a chance to weigh it. Nyana’s first high-flow adventure was spurred on by that day’s doctor’s decision to get Nyana orally feeding as soon as possible, and in a move that I still don’t understand, Nyana’s neonatologist’s orders were somehow trumped by an occupational therapist just two days later. Every nurse has her own solution to best fix what ails Nyana that day, and every doctor seems to act based on whatever piece of literature they happened to read with their whole-wheat Cheerios that day. It’s frustrating.
I know that everyone who handles her and thinks they have a solution to her problems is trying to help. Help her get better and help us get home. But when everyone is grasping at a different straw, trying to tell us that their straw is the magic one, it gets tiresome. Today Nyana’s nurse suggested we try to give Nyana a “treat” of two hours, every shift, on the high-flow. I questioned whether the stress of removing the CPAP just to reattach it two hours later was worth the short-lived freedom, but the doc du jour approved the suggestion, and so the plan was set in motion at her 3pm feed. Colour me surprised when the stress of changing out the CPAP caused her to start screaming and crying inconsolably, which led to puking up half her feed 30 minutes later. The nurse du jour—who, fairly enough, I don’t mind, though her idea today was stupid—quickly deemed the high-flow as the reason for Nyana’s feed intolerance and called for an RT to put an end to her own idea of 2 hours per shift. Seriously. Frustrating.
Far from being a critical case anymore, we’re far from being in a position where we can demand a conference with the staff and demand a primary team. The best we can do now is be as vocal as we can with everyone who cares for her, about what’s normal for her and what’s not, about what she likes and doesn’t like. We advocate now for Nyana more than we ever have before, telling person after person all the things about her that make her more than just “Baby B. in room 1”. After all, with the hundreds of staff who could be caring for her at any given moment, Don and I know Nyana better than anyone else here. And that’s got to count for something.