Family Caregiving

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The Cost of Living Vibrantly

I came across this piece this afternoon, written when my daughter Wendy was 10 and Penny, my other child, was not yet five. It’s funny—a few things have changed, but the core message of how we approach life has not.

By Darcy Daniels

My child’s diagnosis

I have a chronically ill child, Wendy. She’s immune suppressed, thanks to a kidney transplant, and she has a constellation of added health complications such as diabetes, abdominal surgeries and a history of high blood pressure and heart failure. You wouldn’t know it to look at her. She’s the fastest kid in her school, running the mile in under seven minutes. Last week she placed third in the backstroke at her swim meet. She’s run in races and triathlons. She plays the violin and the trumpet. She’s a funny, sweet, sensitive kid, who tries hard to be honest and fair. She lights up a room when she walks into it.

When we were faced with her diagnosis and health complexities, my husband Michael and I decided we would do everything we could to make Wendy’s life as normal as possible. It can be challenging, and it is often exhausting, but I maintain that you don’t know what you have signed up for when you agree to be a parent and all of these difficult, time-consuming things are a part of the package.

Calculated risks

With every decision, we make a calculated risk. We love to travel but, when we do, we have Wendy wear a mask on the plane and take our own pillowcases for the hotel room. We appreciate it when friends tell us they are sick or have sick kids and we avoid them, if you’ll excuse the pun, like the plague. These are our only defenses against unforeseen illness. They’re not perfect and they don’t always work. So, sometimes Wendy gets sick, a side effect of living a vibrant life.

Colorado, here we come

For instance, we went to Colorado over Christmas. We try to avoid winter travel, but we hadn’t been to Colorado during the winter in more than seven years and skiing is Michael’s favourite thing to do,
so we decided to give it a try.

1) We mapped out where the nearest hospitals were that could treat Wendy, including the possibility that we would be snowed in and the passes would close.

2) We packed her medical letter along with all her medication and additional supplies.

3) She wore a mask.

4) We had the pillowcases.

5) We crossed our fingers and held our breaths and got on the plane.

The day we arrived, my father-in-law, with whom we were going to stay, came down with the flu and pneumonia. Naturally, we had to change our sleeping arrangements—not an easy feat at a ski resort over Christmas break. We ended up staying in three different places, and only saw my father-in-law on the last two days when he had finished his Tamiflu and antibiotics. But we had also been on planes and in airports, at restaurants and ski resorts, with daycares and group lessons and in tiny little gondola cars with people from around the world. Hello germs, let me introduce you to my immune suppressed kid.

The fall-out

A few days after returning home my four-year-old daughter, Penny, developed a cough. Two nights later, she had a fever of 101.7—significant, but not alarming. By Friday night Penny had a killer cough, so she went to the doctor and it turned out she had pneumonia. She was put on antibiotics and we tried to keep the
girls apart.

That Saturday came and Wendy had a swim meet. Michael went with her while I stayed home with Penny. He couldn’t seem to control Wendy’s sugars and the site where her insulin pump was attached was painful. When they got home, we took off the pod (it’s a kind of insulin pump) and with it came a glob of puss. We applied antibiotic ointment, put a Band-Aid on it, put on another pod and sent her to her indoor soccer game. Later that night, we squeezed it again—same result, same solution.

On Monday morning, Wendy woke up with an upset stomach and cough. Her sister was staying home, so I suggested Wendy go back upstairs and try to get some sleep. In the middle of the night she spiked a fever, 102.4, and we knew that we were going into hospital. After deliberation between the doctors, a basic plan was set in motion, including hospitalization for observation. No one is going to send an immune-suppressed kid home with a 102 fever. No one. We know we’re staying when Wendy gets an IV port. That’s the ticket to upstairs. It’s the first thing to get put in and the last to go before you’re released.

A new routine

We fall into a regular routine. Doctors come first thing in the morning to examine Wendy. They poke and prod and press on her belly, they ask her if she is in pain, they listen to her heart and lungs, they look at the monitors. Then they leave. Nurses come in for weighing and measuring, for giving daily medications. Then breakfast—some sort of protein such as a hard-boiled egg, sometimes a strip or two of bacon. Wendy always orders a sugar cereal that she would never get at home.

We see staff members—the woman who brings the breakfast, the man who cleans the room, the child life specialist asking what Wendy might like to play with that day. Sometimes there’s a special event such as music therapy or a visiting sports team or therapy dog, and I find that I’m grateful there’s something for Wendy to concentrate on besides feeling awful and confined.

I know Wendy is getting better when she starts to complain that the hospital is boring, that their water tastes funny and the food is gross. She gets restless. We begin to lobby for release, and it’s more like a negotiation with the doctors: If Wendy’s labs look good and nothing grows, if she can eat and drink normally, if her fever starts to trend down, if she can take oral instead of IV antibiotics.

Finally, the doctors decide to discharge us. We wait for the medications, the coordination, the final orders and the follow-up appointments. The last thing to go is the IV port. We know when that is out of her arm that we’re going home.

Everyday worry

In spite of years in the hospital with Wendy, I continue to be terrified by every unexpected trip. What’s easier is knowing there is a whole cadre of doctors and nurses who know and like us, who stay for a while to talk and who hug us when we leave. We know the names of their children and where they are going on vacation, and we know they are going to do the best they can for Wendy.

As the parent of a chronically ill child, worry is a part of everyday life and trips to the hospital are inevitable. But we choose not to let our fears make our decisions for us. I wish I could control it all, but it’s not possible. Instead we live the way we want to live, and we teach Wendy to do the same.

Darcy Daniels is a writer, history professor and co-chair of the Family Advisory Council at Massachusetts General Hospital for Children. She blogs about caring for kids with chronic illness for The Mighty (themighty.com) and on her own blog, Brave Fragile Warriors (bravefragilewarriors.wordpress.com).

Planning ahead helps you keep your cool

  1. Take your time and factor in bathroom breaks, clothing changes and eating.
  2. Book attractions and restaurants ahead of time to avoid lineups.
  3. Have family games ready in case of delays.
  4. Avoid sweets and pack savoury snacks instead.
  5. Remember sun screen and bug spray.
  6. Encourage kids to keep a video or written travel journal, collect postcards and write messages on the back as memories.

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