It’s hard not to get too far ahead of ourselves because there’s always a “step back” around the corner to be wary of…
Those were some of the last words in Don’s post just three short days ago. We were both high on life, loving the fact that we’d both seen firsthand how well she could breathe on her own. We knew it was too good to be true, but we expected it would be Nyana tiring herself out that would put an end to our trials, not politics and bureaucracy and a lack of communication within her team of caretakers.
When we left Nyana Friday night, after a frustrating two days, Nyana was happily asleep on her first day at high-flow attempt #3. I was told by the doctor that if she fails to do well for a third time, it’ll be a long time before anyone will be willing to consider high-flow an option again.
So let me back up a bit. After Don’s wonderful cuddle with Nyana on Wednesday night, I missed rounds on Thursday and learned that the night RT had noted—not entirely accurately, in my opinion—that Nyana was working too hard and showing too much indrawing in her chest to tolerate two hours at a time off the CPAP. On this recommendation, a doctor, unfamiliar with Nyana, had slashed our tackle-free cuddle time in half, to one hour per shift. Knowing her the way I do and knowing how well she’d been doing on her two-hour trials, I was immediately frustrated that yet again, an order made yesterday was vetoed by a stranger today, and that tomorrow would very likely see yet another plan by yet another doctor that would yet again be changed a few days later. Refer back to my Too Many Cooks post for more thoughts on this subject.
One of the more senior RTs came into our room shortly after I arrived, and had a great conversation with me about Nyana’s condition, her size, and where we go from here. I agreed with her (and the night RT and the unfamiliar doctor from rounds that morning) that Ny is not at all ready to come off the CPAP completely anytime soon. I also agreed with the senior RT—she’s promised to step up her involvement with us so we should give her a name… RT Awesome?—that she’s outgrown the CPAP machine she’s on now, both in terms of size and support it gives. There is a pediatric version, BIPAP, that’s she’s just a bit too small for right now. We’re stuck in a sort of respiratory limbo.
While I cuddled Nyana, RT Awesome and Primary Nurse #3 (yes, it’s true. Three primaries now. This one will work with us every other set. We call her Nurse J.Lo.) talked with me about our options and what RT Awesome had tried to push for in Thursday morning rounds: another high-flow trial. It’s been great having her off any respiratory support at all, but if we know that she’s not ready to go without completely, we need to re-evaluate her current care plan. The CPAP masks are getting to be too small for her, so we’re risking damaging her septum by squishing her nose to get the pressures they want her to have. The CPAP is constantly blowing air into her eyes, making it difficult for her to track and focus and make eye contact like we want her to. And the huge contraption protruding from her nose makes any thought of tummy time impossible. She’s too big for CPAP, too small for BIPAP, not ready for no support at all. High-flow attempt #3 just has to work.
So sure enough, Friday found us faced with a different day, different doctor, different plan. Rounds happened in the early afternoon and consisted of a doctor who knows Nyana very well, and an RT who had a printed sheet from RT Awesome to be read out loud as her argument. The doctor—who incidentally was the one who pushed for Nyana’s first high-flow attempt—approved the plan. As an aside, I’m very upset to learn that this doctor, not quite Doctor Awesome, but close, is starting a new rotation on Monday and will no longer be caring for Nyana. A doctor who hasn’t seen Nyana since the solarium days will be picking up the roation. Needless to say, I’m frustrated at yet another lack of consistency in her care.
She’s starting on six litres of oxygen and we’ll go from there. This high-flow apparatus is controversial and there is a clear divide on Ny’s medical team of people who encourage its use, people who think it does more harm than good, and people who think it’s mostly crap but can sometimes be just what a non-textbook baby like Nyana needs. The basic concept is that the nasal prongs deliver 6L/minute, and the sheer volume of oxygen is what provides the pressures that she’d traditionally be getting from the CPAP. The controversy surrounding the method, of course, is that there is no way to accurately measure the pressure being delivered.
High-flow support is an extreme version of low-flow, which is the oxygen support we are anticipating bringing her home on. Low-flow delivers oxygen at quarter- or half-litre per minute volumes, compared to the six litres we’re delivering on the high-flow. The basic difference is that the low-flow is meant to be small whiff for the babes who are still slightly dependent on the oxygen, while high-flow uses preset volumes of oxygen to mimic pressures.
But Nyana’s oxygen requirements are so minimal now that all of her stats look excellent most of the time. However, she is still considered very pressure dependent, meaning that her lungs still aren’t healthy enough to be able to inflate and absorb the oxygen without some help. Because her BPD is a cystic disease, Nyana’s lungs are lined with scar tissue from the cysts, making it difficult for her to open them completely. I spend hours sitting in our glider at the hospital with her propped up on my shoulder sound asleep—I hold her like this because when she’s propped upright, it gives a chance for her diaphragm to open and she can take deep breaths right down to the very bottom of her lungs. It’s a way to cheat her lungs into breathing better, and exercise and strengthen them with every breath she takes.
The doctor’s and RT’s concern about her high-flow trial is that when testing her with little or no pressures, all we can do is physically examine her and look for cues that she’s working too hard. We could do blood gasses to check her CO2 levels but we don’t want to do unnecessary bloodwork on her and torture her with heel pricks every day. There is a risk that by the time we notice any physical changes, it’s already too late and we’ve worked her too hard. Remember that on her first try, by the time we noticed how hard she was working, she’d collapsed some aveoli.
I appreciate the risk, and everyone knows that I want to push Nyana to get better, but I don’t want to push her so hard she gets worse. The first time she was on high-flow she lasted ten days, and she was 700g smaller then and requiring upwards of 32% oxygen. Now we’re ten pounds and comfortable at room air more often than not. I have all the faith that third time’s the charm. At the very least, I trust that we can keep her on the high-flow long enough for her to grow into the big-kid machine, the BIPAP.
Long road, steps backwards, bubbles burst. Our switch to high-flow means no more ‘support-free’ trials for some time. But this isn’t a step backwards so much as it is a step sideways. We’re all in this together trying to find the right combination of what will work best when, and whether or not we have a doctor on any given day willing to think outside the box with us. It turns out there’s a lot of trial and error behind perfecting the science of breathing.