The tapestry of the life of a medically complex family

Double Standard

In my home there’s a double standard. One twin is more frail than the other. One twin appears strong & robust. One twin is tall, rail thin & wispy like the branches of a willow tree. One twin is shorter, more compact and well-muscled like an older & healthier child, with arms & leg branches as solid and strong as an oak.

Doctors examine my twins, ex-27 week preemies borne of a drug-riddled, unmonitored pregnancy. They see the willow tree bowing back & forth with each small breath of the winds of illness. They examine the oak & note strength in the battle to stand strong in these winds. At times they discount the illness in the oak as they compare her status to that of her brother.

I’d love to say that I am immune, that I don’t make this comparison, that I treat them 100% as individuals and monitor her status with equal concern- but I do not. When she readies for bed, I wait for her to drift off to sleep & continue checking her intermittently before later putting on her oximeter. With her brother, I attach the oximeter as I do nightly neb meds & ready to tuck him in for sleep.

She is “easier” when ill, in that she has more reserve, begins farther ahead of the 8-ball. I have great tools to use with her. She is able to tolerate scheduled albuterol nebs that help keep her airways open and moving secretions out of her trach. She has abdominal & chest muscles that help her use more force to clear her airway. Because of all these factors, she is almost NEVER the reason we head in to the hospital. It is also why the docs we DO see in the ER look at her like: ‘yeah, she’s sick, but lets give her antibiotics & send her home’ – even when she’s on 4L of oxygen every time she lies down here. And i don’t think I have ever¬†brought her in to the ER and had the docs look at only her- even if her brother really isn’t that sick seeming yet.

They look at Tav completely differently. He is a silent, stone-faced child when in the ER or under exam. His low tone & willow-wisp arms & legs, feeding difficulty on his best days, and tendency to have very¬†high respiratory rates with any illness, make him their prime target of ‘he needs to stay inpatient for treatment’. He can be showing less difference from his baseline than his very able sister, but she always appears ’100 times better than’ her brother – even when she is the only one growing resistant bacteria out her trach… Tav does not tolerate the same airway meds, throws up more easily during illness, and lacks the musculature to help him clear secretions as well.

Determining illness which warrants a hospital visit is further complicated by their differences. Both kids have to be very ill before heading into the hospital is even a considered option. When there are 2, figuring out what to do with the other if only one needs in-patient treatment is near impossible to solve. It is true that they tend to share all the illnesses but it’s really tough to consider making an “individual” decision when dealing with these two.

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