spinal muscular atrophy writer

Liz B.

Mom

The secret to a good night’s sleep

Everyone has something that keeps them up at night. For me, it was the sheer terror of another excruciating, lengthy hospital stay in the ICU an hour away from our home.

05/2018

Every time Skylar landed in the hospital, my husband, Jim, and I would take shifts by Skylar’s bedside. At 6 pm, Jim would relieve me so I could slog through 2 hours of rush hour traffic for the opportunity to put my unaffected son to bed, eat a home-cooked meal prepared by the family member who had flown in that week to help, jump in a glorious but short shower, and finally lower my weary body into the heavenly comfort of my own bed.

The next morning I would drag myself from under the covers, grab a 10-minute breakfast with my son, and rejoin the rush hour traffic back to the hospital so Jim could head to work. I would spend the next 36 hours entertaining Skylar, overseeing his care, checking in at home, and sleeping in a chair until Jim returned for his next 12-hour shift. The last time, this juggling act continued for 27 days (648 long hours).

Each time the alarm on Skylar’s pulse oximeter would go off, my heart would free-fall to my toes as I raced into his room praying he just needed a little suction and was not descending into another life-threatening pneumonia. When I wasn’t racked with panic about Skylar’s respiratory status, my thoughts would turn to other concerns. Was the gas tank full in the car? Did I call in Skylar’s g-tube formula? When was his next physical therapy appointment? Did I receive his medications? Did I even reorder them? Have you ever noticed how much more catastrophic these issues seem when you ponder them in a half-asleep state in the middle of the night?

As a parent of a child with spinal muscular atrophy (SMA), you quickly realize that it is important to embrace your new normal. Long hospital stays, whether planned or unplanned, were part of our new normal. Much like you would prepare for the arrival of a baby, or in our case, what felt more like a natural disaster, being prepared was the key.

How many times have you dreamed of showing up at work in your underwear or no underwear at all? This dream is about lack of control and preparation, one that replayed through my REM cycle often. While we cannot control many situations in our life, we can control our attitude. It’s important to maintain a positive attitude in a stressful situation. Being prepared is an excellent way to stay positive when disaster strikes. And in my case, it’s also the answer to a good night’s sleep.

Much like a Disaster Preparedness “Go” Kit, we came up with our Unexpected Hospital Stay Kit. Some of the highlights included:

1) Skylar’s “Go” Kit—a small, ultra-lightweight rolling carry-on that contained the following essentials:

  • Pair of super soft pajamas
  • Extra T-shirt and underwear
  • Warm fuzzy socks
  • Cuddly stuffed animal
  • Deck of cards
  • Cozy fleece blanket that’s extremely thin so it doesn’t take up a lot of room in the bag, much like the ones given on an airplane
  • Tablet or gaming device to keep Skylar occupied
  • 3 days’ worth of prescription and OTC medications
  • Checklist of all medications and doses
  • Extra comfortable BiPAP mask and bonnet/headgear
  • Family photo, including the dogs

2) Parent Comfort Kit—a medium-size suitcase that my husband or a friend could bring to the hospital after we were settled, which included the following:

  • Memory foam pad for the convertible chair-bed, which is really a twin-size pad that we cut down to fit the chair. It’s amazing what a difference this pad can make for a decent night’s rest
  • Eye mask to block the lights that never turn off in the ICU
  • Head phones and ear plugs to drown out the frenetic noise of the ICU and the parent snoring next to me
  • Cell phone charger 
  • Bag of toiletries, such as toothbrush, toothpaste, moisturizer, contacts/solution or glasses, deodorant, and personal medications
  • Notebook and pen for ICU notes or a mean game of hangman
  • Cash in small bills for the vending machines
  • Books that I have been looking forward to reading for a very long time
  • Breath mints (dry mouth and dehydration come with the territory)
  • Water bottle, if allowed in the ICU

3) Childcare and Afterschool Plan—a plan to cover the care of our unaffected son. This included:

  • A local friend who would come over in an emergency and was listed as an emergency pick-up at school
  • A list of family members who were happy to be on-call for the long-haul hospital stays

4) Gas in the Car

  • I would never go to sleep at night with less than half a tank of gas in my car

After this plan was in place, my nights got better and so did my attitude toward these events. I started looking for the silver lining. Like the fact that someone else with formal medical training would be alleviating me of 3 hours of respiratory therapy per day. Or the one-on-one time with Skylar that allowed me to enjoy his humor, his wisdom beyond his years, and his amazing attitude. With the knowledge that Skylar was surrounded by experts, I even had more opportunities to read that book I never could find time for.

As my mother-in-law always said, “When life gives you lemons, make lemonade and enjoy!” Fortunately, we are big fans of lemonade.

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