Nyana and I found ourselves back at Children’s hospital on Tuesday, for a meeting with the Home Trach & Vent team. The appointment has been on the calendar for months now—since our first post-NICU appointment with them in May—and I was fully expecting when I woke up that morning that it was finally the day we started to slowly wean Nyana’s dependence on Mr BiPAP. Whether we gave her more time off of her mask every day, or we decreased her pressure settings, didn’t matter to me. We’ve been home for almost five months now and Nyana is still on the same respiratory plan as the day she was discharged from the NICU. She’s almost six pounds heavier than she was the day we brought her home and she’s days away from her first birthday. Surely she’s a much better breather today than she was five months ago, six pounds ago?
It would appear the honeymoon is over.
We weren’t even five minutes into our appointment when Dr Dee told me that Nyana would not be getting any extended breaks from Mr BiPAP any time soon. She took one look at Nyana’s work of breathing—the indrawing clearly visible under her ribcage—and told me that it was significant and to be concerned about. I was a bit taken aback at the use of the word significant. It’s noticeable, to be sure, but that’s Nyana. That’s normal. The doc reminded me that what’s normal for Ny isn’t normal; if you or I showed up in the ER with that amount of indrawing, we’d be admitted and intubated immediately. Nyana’s work of breathing, for all the great strides that we’ve made so far, is still considered significant and worrisome.
After a quick discussion with the team—which literally is a team, by the way: Dr Dee, an RT or two, one med student, and three or four folks who were never introduced or identified—and after a quick examination of Ny, we were pointed down the long yellow hallway towards radiology for a chest x-ray. The x-ray room is painted blue and dimly lit, with jungle cartoons brightly painted on the walls. The technician asked me to remove Nyana’s top, and then two Velcro straps, each about a foot in length, were affixed to her wrists. The technician took her from me and sat her in a tiny chair mounted on the front of the giant machine in the middle of the room. Her arms were lifted above her head and the velcro straps were used to secure the position. In my memory of this moment, she literally has tears springing out of her eyes, and she’s glaring accusingly at me as she screams. With her arms tied above her head she looks like she’s about to be sacrificed, and the look on her face is one of sheer terror. I’m kicking myself for not remembering my camera for this moment. I always had my camera at the ready in the NICU.
The technician snapped a few x-rays and by the time I had Nyana calmed, dressed, and back down the long yellow hallway to the respiratory clinic, Dr Dee had the images up on the screen in our exam room. Not much has changed since our last CXR in April; the scar tissue is still evident on her lungs and is still taking its sweet time healing. The term micro-aspiration was mentioned.
For months we have lived in fear of Nyana aspirating—refluxing formula or gastric fluid into her lungs. The worst thing that could happen for Ny would be to aspirate; we’d almost certainly be faced with a case of pneumonia which would definitely find us in the hospital and very likely back on a ventilator. Lucky for us, a large aspiration would be quite noticeable quite quickly, and we’d be able to treat it before it got serious. Micro-aspirations, though, are small dribbles being inhaled into the lungs over time, slowly causing damage and preventing healing. Dr Dee expressed some concern about Nyana’s overall condition, some bewilderment that for her gestation and birth weight, she’s still struggling as she is. Micro-aspirations are beginning to look like a plausible culprit. We briefly discussed advancing Nyana’s g-tube to a j-tube—feeding directly into the jejunum (intestine) to eliminate the risk of aspirating formula—and agreed to put the j-tube conversation on the “worst case scenario” list. Because Nyana is still shy of the one-year corrected age where Dr Dee would expect to see significant improvement in lung function, we agreed to simply take a wait-and-see approach for another six weeks. In the meantime, Nyana’s pressure settings were increased slightly—the IPAP increased from 10 to 12, for those in the know—and I was given orders to batten down the hatches and keep her healthy as autumn comes rounding the corner. If in six weeks her saturations and her work of breathing have improved with the increased pressure settings, then we’ll make a plan to move forward from there. If she’s still struggling or Dr Dee doesn’t like what she sees, then we’ll have to seriously consider advancing her feeding tube.
I’d be lying if I told you that it didn’t feel like a kick in the teeth to take a step backwards. For weeks I’ve looked forward to this appointment, waited all summer to show her off proudly to her respirology team and hear them sing her praises compared to the fragile and sick little girl they saw in May. At the very worst I expected another “keep on keeping on” visit with zero changes; not once since our last appointment did the thought cross my mind that we could actually move backwards. I knew when we were discharged that escaping the hospital didn’t mean escaping the whole two steps forward, one step back song and dance of the NICU, that there would be setbacks in her healing, but until this week we were doing such a good job of normalizing her life on the outside, and forgetting how sick she still is. This isn’t anything we haven’t faced before, though, and I remind myself that it’s not a step backwards if it culminates in an even bigger step forward. One day at a time, one step at a time.
In happier—and somewhat related—news, Nyana’s hose-for-a-nose pal, Ella had the timeslot immediately before us on Tuesday at the Home Trach and Vent clinic, and walked away with good news all around. Enjoy your new maskless time, Ella!