Administrative Coordinator, Boston Children’s at North Dartmouth
I get here at 7:30 every morning to get things up and running and set up before patients come in at 8. I check patients in and out, schedule appointments, take vitals, perform EKGs … I do a little of everything. I like that no day is ever the same. It keeps the day flowing.
Because patients do a lot of follow-ups here, I see the same faces over and over, and I get to know the children, and they get to know me. I live seven minutes away, so I often see patients outside of the office too, which is really nice.
I’ve been working in pediatrics for 17 years and at Boston Children’s for two. It’s such a nice place to be every day. People are compassionate and understanding. I can finally say that I get up every morning, and I get dressed, and I love going to work. I love, love, love my job.
Caring for patients is a true team effort. Care Team highlights the dedication of the people throughout Boston Children’s who do their part to comfort and support patient families each and every day.
“What time is surgery today?” Ellie, age 12, croaks. She hasn’t opened her eyes yet, but she knows she’s headed to the operating room … again. It may be the fourth surgery this month, maybe the fifth. We don’t know. What we do know is our routine has changed from soccer carpools and homework battles to twice-weekly trips to the operating room, where the orthopedic surgeon will slice open my baby girl’s thigh and attempt to wash out the deadly bacteria accumulating in her right femur and knee joint.
We’re trying to learn the new routine and master a new language. The vocabulary is demanding. There are procedures, medications, devices and acronyms. Most are scary — wound vacuum, PICC (peripherally inserted central catheter), clinical failure of vancomycin, Methicillin-resistant Staphylococcus aureus (MRSA).
The only one who seems to have any answers is the pediatric resident. Unfortunately, he’s nearly always wrong.
Our trip into this alternate reality started on Ellie’s first day of seventh grade.
During a recent visit to Boston Children’s Hospital, three-year-old Gassen Boabed quietly entered the waiting room of the hospital’s Inflammatory Bowel Disease Center.
With Mom and big brother in tow, the tiny toddler, boasting a pretty pink headband and nail polish to match, sat at a child-sized table, picked up crayons and started coloring. She was at ease, and her surroundings were familiar.
The condition, which affects infants and children under 5, causes severe abdominal pain and bloody diarrhea, and it slows growth. The cause(s) of VEO-IBD remain unknown but likely include a combination of genetic and environmental factors.
“Boston Children’s has been taking very good care of Gassen and us as well,” says Gassen’s mother Manal, with the assistance of an interpreter from the hospital’s Interpreter Services Department. “The way they have been dealing with her case has been excellent.”
Melandia Coutinho may be the only 10-year-old who can talk about Harry Potter and the American Revolution in the same breath. She takes Portuguese, plays on two soccer leagues, and she still has energy for homework and climbing trees with her younger brother Marcio.
Two years ago when Melandia was eight, she went in for a routine physical with plans to go to soccer practice afterwards. Her parents Chanda and Jeff Coutinho weren’t expecting big news, but the pediatrician detected glucose in Melandia’s urine and diagnosed her with type 1 diabetes. “We have no family history of diabetes,” explains Chanda. “We were in complete shock.”
Melandia was referred to endocrinologist Dr. Gregory Goodwin of Boston Children’s Hospital. Within hours of the physical, soccer was cancelled, Marcio was with his grandparents, and Chanda, Jeff and Melandia were packed and on their way to Boston.
What is type 1 diabetes?
Type 1 diabetes is a chronic condition in which the body produces little or no insulin. If managed properly, a child with type 1 diabetes can maintain a very healthy, active lifestyle, but it takes work and can be overwhelming for families.
The first step toward managing Melandia’s diabetes was for the family to spend three full days in Boston with the Boston Children’s Hospital Diabetes Program. Nurse educators and floor nurses from the inpatient diabetes team trained Jeff and Chanda on testing their daughter’s blood sugar, administering insulin injections and maintaining a healthy diet. “The goal of the education is to empower parents to take care of their child’s diabetes on their own, with our guidance,” says Goodwin. “If the patient is an adolescent, we try to empower the patient.”
After the initial inpatient stay in Boston, Melandia was scheduled to see Goodwin twice a year and nurse educator Susan Crowell an additional two times a year for followups. The 2-hour round-trip visits to Boston or Boston Children’s Physicians Weymouth were difficult on the family, but Chanda says they were worth it. “We learned so much from Susan. Especially in the beginning when everything was coming at us all at once and we didn’t know what to prioritize, she was really great about helping us focus and stay on task.”
Melandia faces high blood glucose levels
Within a few months of Melandia’s diabetes diagnosis, things were looking up. Melandia had connected with other kids with diabetes, her school nurse was on board, and her blood glucose numbers were under control. “It has been a life change for us, but we’re really lucky that Melandia is such a trooper,” says Chanda. “She’s one of those rare kids who’s not embarrassed about what she’s going through. She is very open about her diabetes and wants to talk about it.”
Melandia’s blood glucose numbers were steady enough at that point that she stopped needing insulin injections. Instead she began receiving insulin through a pump: a small, computerized device programmed to deliver insulin directly into her body.
But after about a year, Melandia started to experience very high blood glucose levels. Chanda made an appointment with Goodwin, who reassured her that the sudden spike was due to the fact that Melandia was coming out of what is called the honeymoon phase. Goodwin explains, “Blood sugars are high when a patient is first diagnosed with diabetes, but then after about a month the numbers go into a tightly controlled or normal range—this is what we call the honeymoon phase. With time, blood sugars start to rise and the honeymoon goes away.”
Goodwin made small adjustments to Melandia’s insulin intake and additional changes again a week later to lower her blood sugar.
The same care with a shorter commute
For Melandia’s latest two appointments and any other followups going forward, the drive to see Goodwin is much shorter. With the opening of a new facility at Boston Children’s at North Dartmouth—seven miles from the Coutinho’s home on the south coast—expanded services have become available, including continuing care for return diabetes patients.
“The convenience is a lifesaver,” says Chanda. “I know other families who have children with diabetes who have to travel great distances for care, and it’s cumbersome to say the least.”
A diabetes advocate
With two years of diabetes management under her belt and her blood sugar levels down, 10-year-old Melandia is thriving.
She recently started fifth grade plus a new season of soccer, which has her playing five days a week. “It’s pretty intense but as long as she enjoys it, we’ll figure it out with her,” says Chanda. Goodwin agrees with this approach.
“Exercise is a good thing because it tends to lower blood sugar,” he says. “We teach patients how to manage their blood sugar while they’re in physical activity—by either adjusting their insulin doses or by adjusting their carbohydrates.”
On a recent typical afternoon, Melandia swings from trees and slides down rocks with Marcio, stopping to test her blood glucose. Without flinching, she pricks her finger and reads the result – 220. “Eh,” she shrugs, knowing from experience that 220 is acceptable for her age and for what and when she last ate. She runs off to catch up with the very active Marcio. “We try to keep life as normal as possible,” Chanda says. “We don’t want the diabetes to manage her. We want her to manage the diabetes.”