The End Of Respite

Nyana has had her share of nurses in her short life. From Tarrah, the very first nurse to watch over her when she crash landed in the NICU, to Heidi AKA Nurse Awesome, who wheeled our Cadillac of a stroller down the long yellow hallway out to a waiting taxi on Nyana’s 222nd day of life. From two nurses a day for her first seven months to nurses in our home three days a week once we brought her home, Nyana has spent her whole life with an up-close and personal glimpse into one of this world’s finest professions.

It’s no secret that when Nyana was in the NICU I had a love/hate relationship with the nurses. The tone of an entire day could be set off by a nurse who rubbed me the wrong way, and on nights when Ny was in the care of a nurse that I didn’t like—or worse, didn’t feel comfortable with—then leaving her alone and heading out across the city without her was even harder than it needed to be. As we prepared to bring her home I anxiously looked forward to days without nurses, despite being granted a maximum of 48 hours of home respite nursing per week—enough government-funded respite to allow for an eight-hour shift six days a week. It took us two months to come around to the idea, but we eventually made arrangements for 18 hours a week—10am-4pm, Tuesday through Thursday—and that’s how it’s stood since June 2011.

Nurse Julie was the first nurse ever sent to us by the nursing agency that first Tuesday; a middle-aged mother to teenage daughters who smelled of patchouli and who liked to vacation in Hawaii. As time went on and we got to know her better, I found it ironic that I liked her maternal nature despite her motherly ways—she was great with Nyana and incorporated play and learning into every day, yet her proper, by-the-book approach to her job often conflicted with our laid-back and often rule-breaking approach to Nyana’s care. In the early days when the Misters were still around and Ny really did need nurses as opposed to babysitters, Julie was forever checking and double-checking things. The rate of the foodpump. The volume. The suspension of her meds. How much O2 were we at. What was the PEEP on Mr BiPAP? How many hours a day is she off? Is she sleeping? Voiding? And on and on. Don’t get me wrong, the thoroughness was appreciated, but unnecessary. She was an odd pairing for us, to be sure, but she was a great fit for Nyana and that was important to us. Julie hung out with Nyana every Tuesday, often going on walks along the seawall when we lived downtown, and more recently, to the park or puddle-jumping now that we’re in the ‘burbs. Julie would often pack a blanket and a lunch into the wooden basket of our stroller and would take Ny out for a picnic on sunny days. Looking back through photos of the past year, I’m sad to realize I only have one photo of Julie, as she visited Nyana in PICU over Christmas last year.

If Julie was the first nurse sent to us that Tuesday, Martyna was the second-ever nurse we were sent the very next day. About as opposite as one could get from Julie, she’s a bleach-blonde Polish gal who vacations in Ibiza and celebrated her 30th birthday during her time with us. The yin to Julie’s yang, Martyna was more of a follower, often allowing Ny to find her own entertainment and then joining in. Martyna also used to love taking Nyana out along the seawall—last summer there were many days where she would load up BiPAP and a days’ worth of food for Mr Foodpump and head out with our Babygirl all day, bringing her back just in time for a nap at 3pm. Over time, Martyna developed a small habit of losing Nyana’s things—somehow I’m drawing a blank on many of the items, though a way-cool Airwalk shoe tops the list. Martyna also gets the distinction of being on shift the one and only time Nyana ever pulled out her GJ-tube, and Martyna was the one to spend her day off watching Nyana while Don and I were at the hospital in labour with Fred. In the past few weeks Nyana has learned the concept of “best friends” and has walked around the house chirping “mama and daddy best friends, Holly and Sofie best friends, Nyana and Martyna best friends!” Martyna’s shifts with us started out every Wednesday, and after many failed attempts at matching a third nurse for our third day, Martyna was eventually assigned to our Thursday shifts as well.

And those failed attempts at Thursday shifts were interesting. I’ll never forget the nurse whose first matter of business was asking for our wi-fi password for her iPhone. Then there was the girl who showed up in skin-tight white jeans and a poofy blouse with a plunging neckline. Her thong and her tramp-stamp tattoo were visible every time she bent over to tend to Nyana. My favourite miss though, hands down, was the nurse who decided to nap in my bed while Nyana napped. I suppose if your job is spent inside someone else’s home, you have no choice to get comfortable, but in my bed? The email I sent the nursing agency about that one just might have found the girl fired.

And it wasn’t easy having people in our home three days a week. There’s a huge level of intimacy to be able to fully care for Nyana, especially in the early days when the machines were part of the package, and Don and I had to fully give over our home to Julie and Martyna. They could see into our fridge, into our bathroom cupboards, Nyana’s dresser drawers. They would take a set of keys when they went out with Nyana for the day so they could come and go as they pleased. For eighteen hours every week, we had two extra people who made themselves at home in our home. And for eighteen months, Nyana lived a part of her life with us yet without us, as Don and I would go about our days in the shadow of Nyana going about her day with someone else.

But as with all good things, our time with Julie and Martyna must come to an end. Eighteen hours might not sound like a lot on paper, but “10am–4pm, Tuesday through Thursday” was a big chunk of weekday calendar, and as Nyana became less dependent on the machines and the nurses became less necessary in a medical capacity, Martyna and Julie eventually became nothing more than weekly playdates for Nyana, government-funded childcare for Don and me. And truth be told, having two other people raise our child part-time meant that there were two other people in Nyana’s life who could conflict with our discipline, our nap schedules, our menu choices. Knowing that the nursing agency was about to pull our hours completely as we reach the end of the “let’s just get her through the winter healthy” season, we opted to cut the reins ourselves and two weeks ago requested that Nyana’s shifts be cancelled indefinitely as soon as possible. Last week both Julie and Martyna said goodbye to Nyana, and today marks the end of our first week officially off the books.

The end of respite marks the end of one of the biggest chapters of Nyana’s story—no more does she require any special care and attention beyond what a normal toddler demands. It’s been more than a month since we’ve used her g-tube and more than six months since she’s needed any respiratory support, and as fun as our nurses were, they’re nurses, not educators or daycare providers. They had nothing to offer Nyana that Don and I couldn’t offer her on our own, and it was time to move on. But we didn’t say goodbye, we said ‘see you soon’—they’ve both become like family to us, and like Nurse Awesome, we’re pretty sure they’ll continue to be an important part of Nyana’s life for years to come.


The End Of Respite — 2 Comments

  1. The end of something usually marks the beginning of something new and this holds true with Nyana and her nurses. Her day-time companions, needed for medical supervision and intervention while Mum and Dad took much needed breaks, are now replaced with typical toddler playdates, birthday parties and visits to the park with mum, dad and baby brother in tow. What was once atypical but necessary is now typical and so normal. Just like Nyana is. A typical, normal toddler who only needs Mum and Dad for love, adventures, guidance and nurturing. Happy graduation, Nyana!!

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