May 23, 2014 A dog for Deacon
by Sonja J. Keith
Every day is different and challenging for Kerri and Curtis Ripley, parents of 2-year-old Deacon who suffers from Type 1 Diabetes. They hope to find help in monitoring their son’s blood sugar levels with a service dog.
Kerri recalls on Nov. 11, 2012, Deacon was fussy and began vomiting, which she thought was a stomach bug. “As the day went on, he just got worse and worse,” she said. Around midnight, she knew something just wasn’t right, so they took him to the emergency room. Deacon was dehydrated and had the appearance of a child that had been malnourished.
“There were no warning signs leading up to it,” she said of her son’s life-threatening health issues.
Blood was drawn, which was traumatic in itself, and the results were alarming. Deacon’s blood sugar was 673, far and above the 80 to 130 normal level. “He was nearly comatose,” Kerri said. “We had no idea.” While rare for a child younger than 18 months of age to be diagnosed with Type 1 Diabetes, Deacon had the disease. He was 8 months old.
Kerri was only familiar with Type 2 diabetes, which she associated more with lifestyle choices like lack of exercise and weight issues. “We didn’t even know a child could get it,” she said. “Right then our lives changed.”
Around 2 a.m. Deacon and his parents were transferred to Arkansas Children’s Hospital by ambulance.
Deacon was suffering from Diabetic ketoacidosis (DKA), a potentially life-threatening complication. “He was helpless. They couldn’t tell us if he was going to be OK. We were watching him on the verge of death.”
Previously, Deacon had been a healthy, typically developing infant. “He had no problems at all.”
At ACH, Deacon was administered insulin immediately, and staff regularly pricked his fingers and toes to check his blood sugar level. “It was just a nightmare,” the young mother said. “He was hooked up to so many wires and tubes.”
Deacon spent three days in Pediatric ICU, and his parents began meeting with the hospital’s diabetic team to learn more about the disease, its treatment and the lifelong impact it would have on their son. Longterm effects can include loss of limbs and heart disease to nerve damage. “All those things you don’t want to have to worry about for your child,” she said. “So many don’t understand life with a Type 1 diabetic. The struggle is so real. It’s been hard on our family.”
Deacon was given a direct insulin pump, which Kerri is thankful for because it eliminates the need for injections several times a day. The couple learned how to operate the pump, how to count carbs to adjust the pump and how to respond if their son’s sugar level changes suddenly.
“It was so overwhelming,” she said. “It was then that life with a diabetic started. It’s been a really, really hard job.”
But the insulin pump and counting carbs are not a cure-all. Deacon has experienced two seizures brought on by a sudden drop in blood sugar. “I heard him scream from his room. I’ve never heard a scream like this,” Kerri said. “I was just beside myself.”
When the second seizure occurred, Kerri repeated what she did previously and checked his blood sugar. It was 39, which meant the level was probably in the 20s when the seizure occurred.
“It took longer for him to come to,” she said, recalling “a look of terror” in her son’s eyes. The little boy told his mom, “I’m done momma,” which she thinks means he doesn’t want that to happen anymore.
“It’s been a really hard journey,” Kerri said, citing the tears, sleep deprivation and struggle with insurance that the family has endured. On occasion, the couple has left Deacon with family so they can enjoy a small break, but she keeps a cell phone close by. “We never get a full break,” she said. “It’s a 24/7 guessing game. There is no rhyme or reason what his blood sugar is going to do.”
A normal day is filled with tests every two to three hours to check Deacon’s blood sugar and adjustments to keep it within a normal level. “It’s definitely controlling our life,” she said. “We spend our days (and nights) counting carbs, doing numbers, division, multiplication, over and over and over in our heads. We have to count each carb that Deacon eats, and give him insulin dosages for those carbs. It is a lot of pressure on us to be sure that we give just the right amount of insulin, so as not to make him drop low, and just the right amount to keep him from going too high. This is near impossible.”
The blood sugar checks number 10 to 12 each day. “He’s a little pro.” When Kerri tells him it’s time to check it, he takes his shoe and sock off and helps by opening the alcohol pad. “The sticks don’t really bother him anymore.”
After the last seizure, the couple began researching options to help their son. They discovered service dogs to help determine changes in blood sugar. A company in Virginia stood out, and the family plans to welcome Roman, a black Labrador, in July. The dogs are trained to use their extremely sensitive sense of smell to detect high and low blood sugars and communicate them with different signals. “It’s truly amazing,” Kerri said. “The hope this dog is bringing.”
Through the company, Kerri has met other parents with children who have Type 1 Diabetes, inclu
ding a family in Cabot. “They are going to be walking this journey as well,” she said. “For the first time, I feel like I’m not alone.”
Kerri is hopeful that Roman will help create more normalcy for the family and more peace of mind. “It’s another partner in this marathon that is never ending.”
After Roman arrives, the company will continue working with the family with training every three to four months over the next two years. Ultimately, Roman will be trained to call 911 and retrieve juice from a refrigerator for Deacon if needed for his blood sugar. “It’s going to be simply amazing,” Kerri said. “It’s going to be a lot of work, but it will be worth it.”
The family has raised about a third of the $25,000 needed for the service dog. They have three years once they register with the company to make the payment, although families try to make it before their dog arrives.
Fundraising events have been held to support the family. The next one is June 28-29 and is a photography fundraiser — a 20-minute session for a suggested donation of $35 — by Reid and Brittany Photography.
“We’re still far from our goal,” she said, adding that they are a young married couple. Kerri works in the home, caring for Deacon. Curtis has a window cleaning business in Conway and Little Rock, and he is also attending the University of Arkansas at Little Rock.
“Our family is ready to take a step of action in order to make life with Diabetes easier on Deacon and to improve his overall quality of life, and possibly even save it.”