The tapestry of the life of a medically complex family

My oldest child is 18. I remember Saturday morning with him: a time of lounging together, sleeping in, Saturday morning cartoons… It was the morning we ate at the diner, got out to the park, met friends for hiking excursions…

Now Saturday “morning” typically begins as a continuation of Friday evening. Getting to bed before Tavish completes his first “barrel roll performance” is impractical. I typically stay awake and occupy myself with the computer or TV or laundry until just about 1a.m. before settling in to my first nap of the night. Overnight “morning” continues as I am startled awake by an oximeter alarm, or a breath that sounds off, or the crashing of knees into the metal siderails of the medical cribs. On & off, I steal sleep in 2-3 hour increments until true Saturday morning begins.

Gone are the Saturday morning snuggles, the invasion of my bed by young children to gently awaken me. Today’s Saturday mornings begin with a startle to awake and realizing that the morning neb treatments must begin or the feeding schedule will be so off we will miss an essential 200-300 calories for the day. Typically I shut off oximeters and then the mist compressors. Together the twins and I stretch our arms to the side, close our eyes, and mark the “moment of silence” before the mechanical deluge begins anew with nebulizer compressors running the first of 2 morning nebs. As the first neb runs, I get Keva from her room or the nearby cushion on the nights she “rooms in” in our “ward”. She gets to the bathroom as I try to make my coffee so I can complete all the rest of the morning tasks which keep my kids breathing well-enough to enjoy some of the day.

It has been quite an evolution from the morning of rest, of “refresh”, to the morning of “assess, neb, toilet, meds, nutrition, assess, repeat”.  The most difficult part of the transition? There no longer IS a “refresh”…


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