The tapestry of the life of a medically complex family

Summer Bummer

Here we are nearing 4pm on a day I have 15 hours of nursing. You might think this would be the day I get tons of things done, get my groceries, do something fun. Well, today I was supposed to meet a new nurse- but she cancelled. Then we were considering going to a museum on the coast- regardless of how anxiety-provoking that is…
While getting the kids ready to go, the oxygen man arrived. We delayed un-dressing & re-dressing until he concluded his 45min process of removing, refilling then resetting the twins’ oxygen tanks. As I began redressing my Youngest, I stepped down onto a large dog toy, lost my balance & went flying onto my back. Another hour gone trying to ice & make sure I could keep moving & keep the headache at bay that threatens each time I land akimbo.

Then there we are at lunch time. 40 minutes for my feeding disordered Trachboy to eat a half cup of yogurt. 15 minute break at the table so we can get peanut butter formula in him so he has calories & more fluids for mid-day. Then I am tired. The idea of packing a car with suction, oxygen, portable oxygen, transferring the twin stroller versus the triple since there are 2 adults & my back is tweaked… The idea of going ANYWHERE complex medical family/ trach-style EXHAUSTS me. Sure there are errands I need to run- the packing & re-packing’s not worth that.

So the nurse & I sit & try to come up with ideas. The movies? No rated G movies are out right now. Bowling? ICK! Community shoes, seats, computers & balls? No thank you, never. The bookstore? The nearest one: “Leather & Lace” does not really seem like my sort of family adventure… B&N is 25-30 minutes away in 3 directions. Sure, it’d be fun, but I can’t afford to buy books this week while paying off the electric & gas that’re overdue & “on notice”.

EVERYTHING outdoor is out. The heat today is “wilting” for a ‘normal’ family. Add trachs, reactive airways, preemie lungs & the added bonus of “heat intolerance” as low as 70 degrees & every outdoor activity is out until September. Cooler temps at the beach? Sand, water & crowds are not our family friend either.

No wonder we rarely go anywhere. Fall is definitely better when it gets cool- but then there’s flu & RSV to avoid. Not really having a good day.


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