Tuesday, October 7, 2008

What It's Like to Have a Child with CF (came from a friend on MySpace, but still very true)

Samantha has gained a little weight, but the doctor doesn't think she is gaining fast enough, therefore, another can of formula has been added each day. That puts us at 6 can a day and 3000 calories a day. Back in a month for weight check.
The added formula, is causing digestive I have a call in to the nutritionist to see what if anything we can do to help that out...

WHAT IT'S LIKE TO HAVE A CHILD WITH CF!!!!Every day is a different day - you hold your breath and curl your toes each time they cough, hoping and praying it's not a precursor to something worse.

Like any parent, you sit up at night when they're sick with fevers - but amplify this by holding the nebulizer mouthpiece of a snoozing or coughing child while you stare sleepily into the dark night. While the rest of the world sleeps, some tiptoe quietly into their child's bedroom to infuse a 12:00 a.m. IV treatment.

Some parents kiss their children good night after reading a storybook and supervising teeth brushing - while some parents of PWCF also hook up a nightly tube feeding. This of course is after the nightly breathing treatment and favored method of airway clearance, e.g. clapping, flutter, vest, pep mask, etc.

During these times, you learn how to operate on less sleep - and with an eye on the medical equipment surrounding you, wonder if it's possible to really take coffee intravenously...

You learn to analyze the minute details of the monochromatic contents in a spit cup - and nervously watch for flecks of blood. You grit your teeth if you hear them cough up what sounds like a ton of gunk - to learn they spit into the sink and washed it down before you could check it.

Changing the diapers of a baby with CF can sometimes be an exercise in gag control... Your toilets might plug up on a regular basis and you consider buying stock in Lysol products and whomever makes Cottonelle and Charmin...

Parents of CWCF rejoice at each inch attained in height and every pound gained in weight - and cry at each ounce lost. School-age children take tests in school - our kids do too, but they also take blood tests, sputum tests and pulmonary function tests - some have bone density tests. School children have photos made each year - so do our kids, but they also get a photo taken of their lungs - and sometimes their sinuses and intestines too. Some endure finger sticks if diabetes is present. We aren't lucky enough to have a grading system of A-F - we have to figure out what numbers best apply to our child and hope human error hasn't cost us an extra stay in the hospital or the dreaded news the child is now resistant to a certain antibiotic.

You learn how to hide enzymes in the foods of recalcitrant infants and tots. You learn to read labels for the highest calorie content. You learn the meaning of a well-balanced diet and your expertise in food preparation begins to rival that of Martha Stewart - presentation is 90% of the art of feeding any child.

Anytime a Certified Freight truck goes by - you get a lump in your throat. Darn those big red and green CF initials anyway... Aren't we allowed to forget for just one minute?

But on the other hand - you become a more compassionate, empathetic, and patient person. Despite trials, you have the opportunity to attain the golden awareness that everything you say - everything you do or don't do - really makes a difference in the life of your children. Every moment is precious. Even the smelly moments...

Being the parent of a child with CF enables you to develop an inquisitive and scientific mind - scoping out information about genes, cells, organisms, herbs and treatments. Even if we weren't good at science when we were kids - just look at what we can do now! You also become adept at handling insurance and hospitalization forms...

You learn to be gracious and tactful even when you don't want to be, like when a stranger or your child's new barber comments on your child's "cold," or a clothing salesperson comments upon sizing difficulties because your child is "too" thin for his sleeve length...

You learn how to be assertive so doctors and staff will listen - really listen to what it is you and your child need, because they are not gods nor mind readers...

And even though you try not to push the envelope on the words "hope" and "cure" - they are always in your heart.

Most every parent sleeps with one ear attuned to the littlest sound - but some parents of a CWCF listen for absence of sound, "Is the oxygen tank working?" "Why did s/he suddenly stop coughing?" "Why isn't the air purifier humming?"

Sometimes you find yourself doing a load of laundry in the middle of the night - after your child has coughed so much they've finally vomited on their sheets and blankets - or fevers have soaked everything.

In the beginning, you wonder, "Is this something I should call the doctor to report?" Then you learn to trust your instincts - you know when to call the doctor - and you want to be able to go straight to the top instead of dealing with a revolving door of telephone receptionists or approval from an HMO.

As a parent of a CWCF your spelling and vocabulary improves. While your friend's minds are turning to mush from Barney and Mr. Rogers, you're learning to pronounce and spell words like: pseudomonas, aspergillus, and cephalosporins.

You get a crash course in physiology and biology. You learn about clubbed fingers, oxygen and carbon dioxide exchange, and the role of the pancreas...

...And Part II of the sex ed talk you have with your teen takes on the added vocabulary word: vas deferens - along with the reminder, "Just because you might not be able to procreate, doesn't mean you can go out and test the theory... your risk of contracting a sexually transmitted disease is the same as others in your peer group."

After Christmas, while some are taking advantage of sales, you hit the pharmacy to pre-buy meds to take advantage of year-end tax deductions.

You ignore the jibes of your friends who think you're obsessive-compulsive because you wash your hands frequently. You begin to resent the fact you have to remind health practitioners to wash their hands before touching your child or the things in his hospital room.

You seethe when other parents send their kids to school sniffling, their noses caked with green crud. You buddy-up to the school secretary so when your child wakes up sick, she doesn't get tired of you calling and asking, "So... just what is going around the schools right now?"

You teach your child to share - but stand aghast when your son's girlfriend shares her pre-chewed gum with him. At ticker-tape speed, your mind reels off the cost of antibiotics and vitamin c...

You understand that when friends and relatives ask about the well-being of the CWCF, they don't mean to exclude the existence of your child w/o CF.

Sometimes you feel like you're in a 3-ring circus. You juggle and balance home, work, hospital, and siblings. You often walk a tight-rope of emotions. You're in the lion's cage facing home-health and insurance issues (who else would hire so many Bozos?). You never hear about people running away to join a home - you wonder why people would run away to join a circus...

You worry about your CWCF on their first sleepover. You count your blessings when the parent of your child's friend says, "Show me how to do cpt so you can get away this weekend."

In some parts of the world, there are certain rites of passage. Having a CWCF is also being aware of "rates of passage:" height/weight rates, O2 rates, sterility rates, insurance rates, mortality rates, divorce rates...

And when people quote, "It takes a village to raise a child," you realize just how big your village is, and how very grateful you are to have so many caring and competent villagers on your side.


Regardless of all the hospital visits we go thru, and all the days that our days and nights get mixed up because you were awake coughing all night, always and forever know mommy loves you.



Jennifer said...

Hi Kathie--It sounds like a long and difficult road you are on with your little girl. Stay strong! I know it is not easy but you are doing a great job!