BY MAUREEN SIMONCINI

The weight of an extended hospital stay …

Maureen invited me over for coffee Tuesday morning.  She explained that Tuesdays and Thursdays are her days with Brody – no nurses, no therapies.  I hand her her cup of black coffee as I sip on a full fat flavored latte, hold the whip.

As Maureen goes to the kitchen to grab some Stevia, I take the opportunity to sit on the floor to play with Brody. It has been about a year since we last saw each other and a lot has changed.

“He has had a good morning no vomiting yet, so I left his pajamas on,” she explains from the kitchen.  “Gotta save laundry where I can.  It’s pretty much guaranteed he will vomit with his morning feed.”

Last year, when we first met, Brody had been out of the hospital for just about a year.  They were still adjusting to life at home—managing nursing care, a trach, a g-tube, EI—all while Jameson, Brody’s older brother, was starting preschool.  This year, as Brody is strongly approaching 3 years old, there is a calm to their routine accompanied by a new excitement and apprehension of what it will be like to soon manage life when Brody starts school.

“Brody was born with Omphalocele,” says Maureen. “In my head, I didn’t think of it as life threatening.  But there were many other factors to his illness too.  His heart is on the right side of his body.  He had heart surgery at 4 weeks old that.  He could have died many times but you just can’t think about it at the time.”

Omphalocele —a birth defect where the intestines and other organs grow outside the abdominal cavity in a thin sac that forms at the umbilical cord, is often associated with other birth defects.  For Brody, treatment included many surgeries and a seven-month hospital stay.

At seven-months old, as they were finally preparing for Brody’s first arrival home, Maureen got a call from another hospital telling her that her husband had had a bad seizure.  “When I arrived at the hospital, they took me to a little meeting room, which you know is never good.  Kenny has epilepsy so I just figured he was tired and recovering.  Turns out he had a grand mal seizure and was now intubated.  The doctor looked at me and asked if I understood what he was saying.  Of course, I said ‘Yes, my seven-month old is actually intubated at Children’s right now.’  So I have Kenny intubated at one hospital and Brody at another.”

Thankfully, Kenny recovered quickly and was home in a few days, but he was forced to take a six month leave from his job as a truck driver.

“So here we all were, my husband, the nurses, Brody still hooked up to machines and Jameson.  In some ways it was great to have Kenny home but all this change was hard on the family, especially Jameson.  At this point, Pedi Pal was the biggest help to Jameson.  Kim [the child life specialist] would come and play just with him and he loved it.  Brody received massage and occasionally I would get a few minutes too.  I talked to social work and met with a therapist a few times, but I keep stuff in a lot.

That’s the other things about having all of these extra people in your house, you just don’t have the time or the space to let it out.”

Maureen has battled with her weight since she was a girl.  Before getting pregnant with Brody, she started working out with kettle-bells and lost 40 pounds, bringing her down to 220, which she then gained back during pregnancy.  During their long hospital stay after Brody’s birth, she once again turned to food for comfort.  She started tracking  food intake  again through the MyFitnessPal app  and lost 5-10 pounds but she knew she needed more.  She was missing the community she had once found at the gym.

As word got out in her community about Brody’s illness, the gym she had previously belonged to offered her 10 free classes whenever she was ready.  For months the classes sat as she waited to ‘find time’ to prioritize her health again.  In the end, it wasn’t that the time suddenly became available; rather, she realized It WAS Time!

“Kenny got sick again.  He aspirated and was intubated again and this time we didn’t know what was going to happen…. I will never forget, I felt like everything else in my life was out of control.  I can’t control Brody’s illness.  I can’t control my husband’s seizures.  The only place I had control was in the gym.  My friends pooled their money and signed me up for the boot-camp.  I had wanted to try it but put it off saying I would sign up when I lost some weight and when life settled down.  So they had to push me to do it.  You have a kick off meeting for the [boot camp] challenge and the instructor said ‘It’s time to take care of yourself!’ Right then I was like ‘YES! I have been taking care of everybody else, I have to also start taking care of me.’  There are all of these things in my life that I can not change but I can do this.”

Brody, standing in the living room watching cartoons with his feeding backpack on, begins to silently vomit.  I hardly notice what is going on before Maureen swoops in to lift him off the carpet and bring him next to the suction machine at the edge of the room.  They are both unfazed by the situation, Brody obviously confident his mom will help to quickly clear his airway; mom happy that his outfit and the carpet have survived another hour.  The suction machine is turned on and our interview continues as she suctions Brody’s trach and he turns back to continue watching his cartoons.

2 years, and 120 pounds, after her ah ha moment Maureen is now at her goal weight.  “I am trying to bring this shift into my kids life. We go for more walks now and go outside and play ball. It is not always easy to include physical activity when you have a child like Brody but we just make it happen now and the boys love it.”

When asked to share advice on how others can get started with their physical self care, Maureen says, “Find something that interests you.  Take the challenges you face caring for your kids and apply that challenge to yourself as well.  It’s time to take care of you because once you do you will take so much better care of them.”

She continues, “All it takes is one hour.  Get out of the house.  You are worth it and don’t listen to what others may say. They look at Brody’s nursing hours as a break for me.  It’s hard for people who don’t live this life to understand how hard it all is. I can’t wait for the day where I can just put my son to bed.  Kiss him Goodnight and its two minutes like most three-year olds. But the reality is our bedtime includes pulse-ox and flushing tubes and all of these extra things.  Nothing is easy.  An hour a few times a week is not a benefit I am allowed because of Brody’s condition. It is a requirement for me to be able to keep up.  I need to be healthy for him.”

A few minutes later, as we are still deep in conversation, Brody runs up to his mom and asks for a hug. The room falls quiet as we focus on this fleeting moment of sweet embrace.  “I couldn’t hold him for so long when he was a baby.  So now when he comes to me for a hug and a kiss, everything else in my world stops.”  Pure joy and gratitude radiate as she takes in every second of his impromptu cuddle, and then just like that he is off and running again – like a typical three- year old.

“Brody can you show Kerri Fast Feet…now Squat!?”

Brody shuffles his feet and squats, still wearing his feeding pump backpack and a giant smile.

***

It can feel impossible to carve out the ‘me time’ when caring for a medically fragile child but studies have shown that caregivers who neglect their own need are at risk for increased mental and physical disease in the future.  Here are some Self Care Tips regarding Diet and Exercise

Maureen:

Loosing or maintaining weight is 80% Food 20% workout.  Prep is everything.  I packed a cooler for long hospital stays.  I would pack my protein, hard boiled eggs, chicken and mix it with the salads I could get at the hospital.  This cut down a lot on my food cost during hospital stays and it kept me on track with portion control.

Go for walks even if it’s just around the hospital floor.  Often hospitals have access to local gyms for families who are inpatient for long periods of time.  Some hospitals even offer yoga classes or other group activities.  Ask your nurse to see what may be available while you are inpatient and take advantage.

Elizabeth Micale RD, CPT adds:

Hospitals can be a tricky place to find healthy options but they are there.  Look for fresh foods, fruits and vegetables, low sodium soups and salads.

Predetermined cafeteria meals are often twice the calories you need for one meal.

Try mixing and matching your meals – a piece of fruit, yogurt and some chicken or cheese stick can be a good meal any time of day.  You will feel better mentally and physically if you take the three minutes to make a good food choice instead of grabbing for what’s easiest or in front of you.

Listen to your body, if you are hungry have a healthy snack instead of waiting for mealtime.

Think of food, exercise and sleep as medicine. 

Many parents in the hospital rely on caffeine to combat the lack of sleep.  Rather than grabbing that second or third cup, try taking a short brisk walk.  This short exercise will create some of the energy your body needs to make it through the rest of the day without the crash and burn effect that sugars and caffeine can leave behind.

There are also many small exercises you can do throughout the day right in the hospital room.   You don’t need to do an hour-long workout to stay on track.  Get up ever few hours and do a few basic squats, lunges, planks or jumping jacks. It may feel silly at first but making a game out of it or involving others can help pass the time.

Aim for a goal of 5-10 minutes of calisthenics and a 10-minute walk 3 times a day.

When friends and family are looking for ways to help, suggest grocery gift cards over restaurants, or vouchers for a local gym, family rec center or wellness center.

And give yourself credit.  Celebrate the little victories. Each positive choice counts!

Helpful Apps:

Myfitnesspal – nutrition tracker

Jillian Michaels – exercise demos

Take a Break – guided meditation

Helpful Sites:

“Caregiving stress, immune function, and health: implications for research with parents of medically fragile children.”

http://www.ncbi.nlm.nih.gov/pubmed/15764433

Family Caregiver Alliance

https://caregiver.org/taking-care-you-self-care-family-caregivers

http://kidshealth.org/parent/system/ill/seriously_ill.html#

http://www.cyh.com/HealthTopics/HealthTopicDetails.aspx?p=114&np=304&id=2578

http://www.med.umich.edu/yourchild/topics/chronic.htm#family