Back into the depths of sleep deprived nights we go...
Since the diagnosis of SMA we've often heard "horror stories" regarding overnight nursing which was one reason we didn't pursue that option earlier. However, the lack of sleep over the years has taken its toll...so recently we decided to explore the night nursing option.
We have gone 8 full years without a full night's sleep. Ever since Ava was born in 2007 we have had a baby in the house keeping us up---and now SMA keeps us up. Eight long, tired years.
Through much paperwork and some red tape we finally received notice that Ella qualified for overnight nursing care. Once it started we could hardly believe the difference we felt after just a few nights sleeping a full 8 hours...uninterrupted. Wow!
Then...the nurse began taking unauthorized nights off followed by a stretch of no-shows. It was hard enough not having the nurse show up---but she didn't notify the agency or us about her absence. Each of those nights we were up waiting for her to come (her arrival time was 10:00pm)...so by the time we were notified she wasn't coming it was 10:30 or later. Couple the late bed-time with numerous wake-ups to care for Ella throughout the night we found ourselves right back to days of operating on limited rest.
Needless to say we spoke with the agency. It won't be until after the new year until we start the process of finding a new nurse and hopefully a back-up (although simply getting a primary nurse is hard enough as it is let alone a back-up). Of course, when we go through the interview process we will be absolutely sure to indicate our expectations as clearly and respectfully as we can.
Ella deserves the care overnight and our family must get a good night's rest in order to function to our fullest each day; our kids need the rest to learn, Lindsay and I need the rest to teach, and all of us need the rest in order to run our daily "life with SMA" as smoothly as possible.
Tired & Sleepless in Naperville...
