So we’re home. We’ve been home for more than a month and we’re happy and we’re adjusted. And we’re doing phenomenally well, all things considering. Nyana is breathing at home better than she ever has, she’s gaining weight like her life depends on it (it sort of does), and we’ve only had a handful of small spit-ups and zero legitimate desats in the month that we’ve been home. It’s hard to remind ourselves sometimes that even though we’re living on the outside and we’re doing normal things—and doing them surprisingly well, I might add—it’s hard to remember sometimes that she’s still sick, and that she’s still a long ways from being healthy.
A girlfriend of mine asked me the other day what our long term prognosis was now that we’re home. She told me to tell her to shove off if she was out of line, but whether it comes from close friends or perfect strangers, it’s just part of a series of questions Don and I are faced with each and every day, now that we—and she—are on the outside. How is she doing? How healthy are her lungs now? How long will she need the g-tube? How long will Mr. BiPAP be around? Is she getting better, though? When will she be normal?
Truth is, we don’t have the answers. I know how I’d like this story to end—quickly, with zero steps backwards from here—but I also know that’s likely not how it will all play out. We had an appointment with respirology last week and between the rapid weaning I’d become accustomed to in the NICU and the awesome high scores she’d been getting at home, I’d just assumed that this appointment would find us taking a step forward somehow—either by lowering her pressure settings or by increasing her time without her mask on. Instead, I was told she’s doing awesome and was handed an appointment card dated August 30th. No changes to her respiratory plan, which at this very moment reads as follows:
- Biphasic positive airway pressure, 10/7, 21% 02 (room air): 19.5 hrs per day
- Low flow nasal cannula, 1/8L O2 per minute: 3 x 90 minutes per day
- Ventolin puffer via aerochamber: 2 puffs 2x per day
- Flovent puffer via aerochamber: 1 puff 2x per day
- Hydrochlorothiazide (diuretic): 1mL/5mg 2x per day
- Spirolactone (diuretic): 1mg/5mL 1x per day
I won’t lie, I was a bit disappointed to hear that we’re still on with the “keep on keepin’ on” momentum, all summer long. I’d had visions of three, four hour stretches completely untethered; free from Mr. BiPAP and Mr. Oxygen, free to show Nyana the lake and the playground and maybe even a bonfire. But—stop me if you’ve heard this one before—we’re on Nyana’s time now, and I don’t get to set the timelines. And as much as I want to trade her in for a perfectly wireless version, I’m not about to do anything stupid and push Ny further than she’s ready to go; we’ve pushed her far enough as it is by deciding on our own two weeks ago (and then getting the go-ahead from the respirology team a week later) to remove the oxygen from one of three of her maskless trials every day. For two great weeks we enjoyed the morning routine of meds, puffers, breakfast, and playtime, completely unwired from everything, free to move around the apartment with nothing tying her down. And then the respirology team changed their minds.
Part of the appointment we’d had with respirology—also known as the Home Trach & Vent team—was to bring home a sleep study machine that monitored everything from blood saturations and heartbeat to the extension and collapse of the diaphragm with every breath she took. We hooked up all the leads and wires as we put her to sleep that night, and returned the machine to the hospital a few days later for them to print out the data we collected. On Wednesday the doctor called me with the results, which apparently are a hesitant OK. Not dismal, but definitely not great, either. The doctor explained that while she is maintaining decent saturations, her work of breathing is still quite significant and she is still at heightened risk of developing pulmonary hypertension. We had an echo back in February to check for any strain on the heart and no one was concerned then, but I’m told that hypertension doesn’t often present itself until around six months (corrected). We have been strongly cautioned against continuing maskless trials without oxygen, and have been ordered to speak to our pediatrician when I see him next week about making arrangements for another echocardiogram.
When it comes to Nyana’s g-tube and the question of how long Mr. Mic-Key Button will be along for the ride, this one is dependent mostly on how quickly her lungs heal, and a bit on how soon her teeth come in. The co-dependency between the lungs and the stomach means that we’ve been strongly advised against starting on solids, which of course prolongs our time spent with Mr. Foodpump. It stings a little to know that other six-month babes are enjoying culinary adventures when the best I’m allowed to do is feed Nyana formula with a spoon, a half millilitre at a time and only when not not on bipap. But “not allowed to” doesn’t mean I won’t do it anyways, and while we’re not feeding solids per se, we’re letting her taste new flavours off of our plates every few days and participating in the tiniest amount of baby led weaning—a few days ago I gave her a cooked snowpea as a chewthing at the dinner table and she didn’t completely hate it, so I’ll call that a success.
But for the time being we’re exclusively g-tube fed, and after being bumped from our surgery date twice, Mr. Button has officially joined the Sunshine Brigade. On Thursday morning Nyana and I returned to the hospital again, this time to trade in her 10″ feeding tube for a low-profile device. We had been told to be at the hospital an hour before our procedure, to get admitted and gowned up and weighed (7.0 kilos!). A simple 15 minute procedure found us waiting to get in to the OR for nearly three hours; a bad reaction to the anaesthetic—a simple matter of forgetting to breathe as she fell into a deep sleep—meant that Ny was given the bare minimum freezing needed to stretch the stoma from 8mm to 1.5cm. She was in a great deal of pain when she woke up and was given a dose of morphine to sleep it off for a few more hours. We were finally discharged shortly before 5pm and we made our way down to the train, across the city, to meet Dad and walk him home from work.
To make a long story short, we don’t know what the long term prognosis is. We were given a glimmer of hope at the respirology appointment, that we’re working towards spending our days free from Mr. BiPAP by Christmas—he’ll still stick around for night time and nap time for a while yet, however. Developmentally there are some concerns, as well as some great successes, but those deserve a post of their own in the near future. For now, we’re doing just what we begged the hospital to let us do: we’re picking up where they left off and we’re working towards healing at home.