The tapestry of the life of a medically complex family

Archive for January, 2012


We have a stuffed elephant about whom we are writing a family book. At some point, I’ll tell you more about it but for now I have to share my youngest’s page from today- before I fall off the couch in my next fit of laughter. The text reads:
Elephant walked to the other counter and cleaned up after the mouse.


Note the green sponge in elephant’s hand & giant mouse excrement…

The Deli Drawer

If you’ve read much of my blog, you know my kids & I follow a special diet. We eat organic & homemade, without grains, starches or complex sugars. The Specific Carbohydrate Diet has no processed food of any kind on it- no “deli” items come to mind that need be in our fridge- & good thing.

Currently our deli drawer is housing about $25,000.00 worth of medication. The twins new regimen for inhaled (nebulized) medications includes Tobramycin. TOBI is a string antibiotic that kills the types of bacteria kids with trachs tend to grow out regularly, and occasionally in large enough populations to cause actual illness. Our pulmonologist wants to be pro-active & avoid these infections for the twins while we work to avoid other viral illnesses that might land us in the hospital again this winter. Yay for proactive healthcare & yay insurance.

What’s in your deli drawer?


The Weight Game 1-2012


This year has been slow with weight gain for my kids. Although all 3 have “BMI” that fall within the 5-52% range [healthy is 5%-85%], two of my children have gained less than 2 pounds in the last year. My daughter with a trach has fared the best, gaining 3 pounds, 5 ounces, while falling below the third percentile for height. My son with a trach has gained a mere 1 pound 3 ounces but has gained height percentile to the 10%ile. My youngest has gained 1pound 13 ounces but her BMI is at the 17%ile, with height at the 60%ile for age & weight at about the 40%. Here are their stats:


January 2012 Adrien Tavish Keva
36lbs7oz 35lbs8oz 34lbs2oz
Height 41″ 42.5″ 41″
BMI 15.3/ 52% 13.8/ 5% 14.2 / 17%

Kairos 1-20-12

A glimpse at our new adventure:

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Food Fight

Yesterday I read a post about parenting being like climbing Mt. Everest. I wholeheartedly agree with the writer & will link it here if I can ever get my iPhone to work or to a real computer. When this writer describes Everest, she refers to the everyday work, joys & challenges of parenting a child born into this world with the equipment needed to complete the climb along with her- for lack of a better word: parenting of the “typical” kid.

Parenting my children is more like climbing Olympus Mons. You don’t know what that is? You can’t relate to a person who climbs Olympus Mons versus Everest like everyone else? Story of my life- story of OUR lives. Add to that the lack of equipment available to manage the climb we’re attempting and you have some glimpse of what we do each day.

Today, nay the last 3 days, -aw, hell, the last 5+ years- the climb of Olympus Mons has again been complicated by the loss of provisions. Which provisions? The joy, the desire, the ABILITY to eat food, or drink calories, in a quantity that is both life-sustaining & growth-promoting. We sit on the ridge of the Karzok crater, waiting for a sip to be taken, a bite to be eaten. A storm is gathering on the horizon & we need to make the climb to the outcrop for shelter and he continues to refuse to eat- to ingest the energy source needed to help him make the climb.

Every day, every meal, I don my armor to fight the battle of feeding my preemie who hates to eat. My armor is dry & cracked, covered in Martian dust. I look up the hillside, wondering how much further I can climb while carrying them all. I put the cup to his lips & pour, hoping enough is ingested as I watch the fury cross the valley, threatening to overtake us before breakfast is done.

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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