A day with my granddaughter

Now is the time for a memoir. This is about family and my granddaughter handling Cystic Fibrosis. I think some of the emotions show through as they should. She is a marvelous person and we want her around forever, but we will have to see.

"A Day with My Granddaughter"

It has been a two and a half hour drive to New Jersey and it is 10:30AM when I pull up to the parking garage. The uniformed Kinney guard asks “What is your business?” “To visit my granddaughter” I say. As I park jack hammers pound the floor above with noise thundering around me, the elevator door closes to silence then opens to black marble floors and floor to ceiling two story glass walls. I am in the Robert Wood Johnson University Hospital and blue jacketed guides direct me to the main lobby with its grand player piano that plays soft pop music, then past the Surgical Waiting Room, Administration, Anesthesia, the Perioperative Material Management Office (your guess is as good as mine) and the Soiled Utility Room (don’t go there) to a glass corridor with children’s sculptures; one is made as an interactive Tic Tack Toe game, one a string less harp and one a speaking scale. Somehow kids never make it here, I only see contract workers using it for a lunch area. At the end is the Bristol Meyers, Squibb Children’s Hospital (are these drug companies giving back or adding market?).

I wait for my granddaughter, 4 ½ years old, 40 inches tall, weighing 33 pounds who sparkles with shy energy. She is a runner, a dancer (does well to James Brown), a quick study and a definite individual with delicate skin, soft hair and blue eyes. Two years ago she was diagnosed with Cystic Fibrosis.

CF is an inherited genetic disease that causes secreting glands to not function normally. Instead of producing thin,slippery secretions such as sweat, mucus, tears, saliva and digestive juices it makes thick sticky secretions that become plugs that can interfere with breathing and digestion. It used to be fatal in the first ten years, now lifespan can run 30 – 50 years.


She bounces across the lobby ahead of her parents shouting “GranBob”, my particular name. She is here for a “tune up”, a two week long heavy IV dosage of antibiotics and specialized drugs. Her new doctor saw a darkening on the left side of her lung in her x-rays last week and ordered this.

Her normal day includes three 10 minute nebulizers and an inhaler for special drugs. She gets enzyme pills at each meal for food digestion. Insurance covers the $3,000 monthly cost. This is followed morning and night with half hour sessions of chest physical therapy (PT) (left, right, front and back chest pounding to dislodge the sticky substance from the five chambers of the lungs so that it can be coughed up). It is this physical almost medieval, cupped hand, chest thumping on her small delicate body and her submission of it that affects me more than the IV’s, drugs, PICC lines and Xrays. It amplifies the intensity of our fight against this disease and fear, anger, injustice and empathy make me want to bolt from the room each time I see it. Ada watches cartoons with measured acceptance.

Nancy greets us with paperwork, a thirteen year veteran in her job, she is personable and efficient. She passes us to Sophia in light blue scrubs who is confused as to where we should go. After fifteen minutes we are delivered to the fifth floor children’s area with its special Children’s Media Center and Amber takes us to room 5016. My granddaughter walks quietly taking it in. She did this at another hospital a year and a half ago. 5016 has an entry door, a pantry, then a second door to the actual room. As CF patients have a lower resistance level, she will be under “Contact Isolation” rules which means she can’t visit the Media Center and all hospital personnel must stop in the pantry and put on a plastic gown and rubber gloves before entering her room. Diane (nurse) and Ali (student nurse) come to meet her and listen to her chest “crackles” (air passages sticking and unsticking with each breath – I borrowed the stethoscope and couldn’t hear a thing. It definitely takes training). Halley comes to take blood pressure and temp. Michelle comes to get phone contact numbers, Maria and Kosmul, doctors assistants listen to her chest and review her history.

Between visits we spread out toys and decorate the room with paper chains and colorful plastic flower pattern pieces that are stuck to the window and cause colored outlines on the bed. She is into her art work and tolerates the interruptions stoically.

Louise comes from housekeeping, Jenn from the Media Center, Heidi the social worker visits. Deborah does 45 minutes of PT (this will be done four times a day here). Around 2PM my graddsughter is wheeled to the “Procedure Room” where the temporary IV is put in her arm. The student nurse tries twice with the needle missing the vein, the day nurse needs two tries to get it right. Ada returns unhappy and subdued, but soon is back at her art work.

The doctor’s assistant Lee Ann visits with great information on CF care, the doctor visits (a great improvement in manner from their previous doctor at another location who is a national expert but aloof and abrupt and difficult to get answers from). Another technician, Mary Lynne gets blood pressure and temp. Deanne, a wonderful person who communicates at her level physically and quickly and compassionately covers for my daughter all aspects of the procedure schedule then does PT.

It is now about 4PM and I realize that so far sixteen people have passed through 5016 in four hours. she has had to absorb, evaluate, work with, include and accept them all. I marvel at her sense of self, at her ability to handle complexity, to acknowledge, to read people, to accept and work to understand.

My daughter moves the IV stand to the right side of the bed and gets a long line so my graddaughter can bounce off the bed to the chair, and to the window. she is up and about twirling to keep the line clear, careful at its limit but free within its scope.

She tells jokes:
“Why does the chicken cross the road?”
“To get to the other side.” She gives a small laugh, then again –
“Why does the chicken cross the road?”
“To get back home.” She throws her head back and sprays giggles all over
the room as she made that one up.

She produces scenarios:
“You say this, I’ll say this, then…. “
If you get the words or the tone wrong you are gently corrected.

It is dinner time now and this hospital lets you order from a menu at a time of your choice. She orders chicken fingers and mashed potatoes (her personal favorite) with lots of butter (CF kids need lots of fat and sometimes she will eat butter right from the stick and we all are delighted).

I leave for the motel at 9:30PM and know that tomorrow I’ll be back to see her handle no food for 24 hours, a PICC line (long term IV line) insertion under anesthetic, four more PT sessions, 20 plus contacts with doctors, nurses, etc. still with her integrity and character shining through.

It is special for me to be with her. I admire her and love her so much and feel the frustration of not being able to solve this. I worry as well about my daughter and her husband who manage with the complexity and drain of this each day. Her zest for life helps me refuel my aging pursuit of adventure. She reminds me of the health I take for granted, of the extent of personal options available to me, and the wealth of past good times.

It has been a good day with my grand daughter.

If you'd like to learn more about cystic fibrosis click here to contact the Cystic Fibrosis Foundation on the web.