Despite how unlikely it sounds, a bout of appendicitis helped save now-4-year-old Carter Kopf’s life.
This was last fall when Carter was 3. He came down with a sudden case of belly pain one Friday and his parents, Melissa and Matthew Woodruff, Pacific, initially thought was a routine stomachache.
Trips to Mercy Hospital Washington on Friday night and again Saturday morning found that Carter’s belly pain was actually being caused by appendicitis, but test results also revealed something no one had even been looking for — type 1 diabetes.
“I remember seeing the lab lady look at the glucometer, and her eyes got really big,” said Melissa Woodruff, who works as a nurse in the nursery at Mercy Hospital Washington. “So I knew something was off. I asked her what his blood sugar was, and she said, ‘301.’ So we knew that something was wrong . . . I had a bad feeling.”
Right away Melissa knew there was a good chance Carter had type 1 diabetes. She had grown up watching her biological father live with it, and his experience was full of serious challenges.
“He passed away at age 38 from complications from it,” said Melissa. “He’d had a kidney transplant, both legs amputated, three of his fingers (amputated) and was confined to a wheelchair the last several years of his life.”
There was still a chance that Carter’s blood sugar was elevated as a result of the appendicitis rather than diabetes, so he was transported to Mercy Children’s Hospital on the campus at Creve Coeur, where he received a hemoglobin A1C blood test that could show the history of his blood sugar for the last three months.
His elevated blood sugar wasn’t an isolated incident. Carter had type 1 diabetes. It was tough news for the family.
“I had such a bad association with diabetes because of my dad’s experience,” said Melissa. “Seeing home health nurses come change his bandages on his stubs . . . seeing how depressed he got with it, and all the negative parts of it . . . so you automatically think, the same thing is going to happen to him (Carter).”
But the staff at Mercy Children’s Hospital and JDRF — the Juvenile Diabetes Research Foundation — explained that didn’t have to be Carter’s fate.
“Luckily we were educated really well,” said Melissa. “We were at Mercy Children’s for almost a whole week. We had people coming in for six to seven hours a day educating us on type 1 diabetes and how to take care of him, how to count his carbs, how to give shots, how to check his blood sugar.
“They did an excellent job and totally helped us through it.”
The Woodruffs now actually feel very fortunate that Carter’s diagnosis was found early and before he was exhibiting any life-threatening symptoms.
“A lot of parents will bring their kids in (to the hospital) in what’s called DKA or diabetic ketoacidosis and at that point they start out acting with flu-like symptoms, parents don’t know what to look out for, they just keep feeling worse . . . and it gets to the point where their blood sugar is in the thousands.
“They are brought in and immediately put into the PICU (pediatric intensive care unit), because that high of blood sugar can be fatal.”
The Woodruffs call Carter’s appendicitis “a blessing in disguise” because it’s what led to them discovering his diabetes. Had he not had that stomach pain, who knows how high or low his blood sugar could have gotten before they realized something serious was wrong.
Three-Year-Old Checks His Own Sugar
It was hard getting Carter used to the new normal of his life — checking his blood sugar before each meal and at then again before bedtime, at midnight and at 3 a.m.
“He can have checks between six and 10 times a day,” said Melissa, “it just varies. If he’s really active, that will decrease his blood sugar. If he’s sick, that will increase his blood sugar.
“When he’s sick, we have to check his blood sugar every two to three hours.”
If Carter’s blood sugar is low, he can end up going into a seizure. The lowest reading Carter has had so far is 29, said Melissa.
The Woodruffs have learned what kind of behaviors to look for to identify when Carter may be experiencing a high or low blood sugar, when they should give him an unscheduled check.
“If it’s low, he’s pretty lethargic and slow, but within a couple of minutes of him drinking a juice box, it comes up right away and he’s back to himself,” said Melissa.
“His high blood sugars . . . it’s almost like he’s got all of this bottled up energy and he can’t get it out. He can’t stop. He gets really mad, really emotional.
“In those cases, we have to give him an extra shot of insulin called a bolus to help bring the blood sugar level down.”
Shot-wise, Carter gets a shot after each meal and then a shot at bedtime.
So he gets four shots a day, plus any other boluses if he has a high, said Melissa.
Carter does his blood sugar checks on his fingertips or toes. In the beginning, when he was still in the hospital, he pushed back at this new reality, said Melissa.
“He cried. He didn’t want to do it. But we knew, as parents, it’s what we had to do for him to stay alive.
“If it’s not treated, he can die from this.”
Sometimes it came down to Melissa and Matthew holding him down to check his sugar because it was life or death.
“In the hospital, he’d say, ‘I don’t want to do the snappy! I don’t want to do the snappy!’ ” said Matthew, explaining that’s what Carter called the needle device that pricked his fingertips.
To help him adjust, nurses gave Carter extra “snappies” that he could use to pretend to check the blood sugar on his stuffed St. Louis Blues “Louis” bear.
“He would stick (“Louis’ ”) finger, and then he would be OK with it so they could stick his finger,” said Melissa. “He’s a big hockey fan.”
It wasn’t long before Carter had adjusted so well to having his blood sugar checked six or more times a day that he began wanting to check it himself. He’s been doing that now for quite a while, said Melissa.
“He just hands us over the glucometer and we have to interpret the results.”
Coming home from the hospital was a big transition, the Woodruffs said.
“On our first night home, his glucometer read ‘HI’ and we frantically called the pediatric endocrinologist to ask what is that?”
They found out that meant a blood sugar over 500, “so the first couple of nights we didn’t get a whole lot of sleep because we were worried it would drop too low or go too high.”
Living with the highs and lows has become second nature now. The family doesn’t panic at those moments, but every time Carter has a new all-time high or low, they definitely feel nervous.
“A blood sugar of 29, you don’t act panicked, but inside your heart is racing because you know at this point he could be seizing,” said Melissa.
Just 10 months after his diagnosis, Carter has experienced enough highs and lows to recognize when he’s feeling like his blood sugar is off and then check it.
Lows are common after he’s been doing anything really active, like playing his Wii games or being outside on the playground at preschool, said Melissa.
First Child With Diabetes at His School
Before Carter’s diagnosis, the Woodruffs had been planning to send him to preschool this fall, and after the diagnosis, they were determined to stick to that plan.
“We don’t want him to feel that he’s different from any other child,” said Melissa.
It required a lot of preparation though because the school had never had a child with diabetes before and there is no school nurse on staff. What made it much easier though was that the school staff was eager to learn all they could about diabetes, said Melissa.
A rep from JDRF came into the school to educate the teachers about type 1 diabetes, and then Melissa spoke to them about the specifics of Carter, what his highs and lows look like.
“They’ve done wonderful,” she remarked. “They’ve handled lows so far. We have an open relationship where I’ve told them, ‘I don’t care what time it is, you can call me with a question.’ Because one wrong move with the insulin could be detrimental.
“They’ve been great.”
Matthew pointed out that Carter’s all-time lowest blood sugar, 29, happened while he was at school. The staff handled it all and then called Melissa just to let her know.
“They had given him a juice and had his sugar back up to 140,” she noted. “They did just what they should.
“Now it’s gotten to the point where they don’t call me for the lows. They give me a report when I come to pick him up,” she said. “They’ve been wonderful.”
The Woodruffs appreciate how cooperative and accommodating the school staff has been.
“It’s a big responsibility to expect a school that has never had a diabetic child to take on something like that,” said Melissa.
Giving Carter his necessary insulin shots was probably the scariest thing for the staff to overcome, she admits. Just doing the calculations to figure out his carbs was intimidating, especially using the calculation sheet the hospital sent them home with.
That’s why Melissa created a new, much simpler version.
“They have to check his blood sugar before lunch. If it’s between 90 and 200 (normal for Carter), then he won’t get any insulin.
“If he’s low, then we have to do a negative calculation based on how many carbs he eats. And say it says we’re supposed to give him five units of insulin, but his blood sugar is low, so it will tell us how many units to take away from that five.”
Carter eats the school lunches rather than taking his own. That requires a little bit of guesswork on carbs, said Melissa, noting they have a reference book that offers a general idea of how many carbs are in certain foods.
“One thing they (JDRF) have taught us is that diabetes is not a black and white disease. There are so many gray areas. There’s so much that’s not known about it.
“And the treatment, it varies, because once we have figured out what we think are the perfect doses for him, once he gets sick or when his hormones change, like in puberty, it’s all completely shifted. So what works this month, might not work next month.
“It’s all one big guessing game, and it makes the disease really hard to treat.”
In addition to sticking to their plan about sending Carter to preschool, the Woodruffs are sticking to their plan about signing him up for sports.
“We actually have him signed up for beginners ice hockey,” said Matthew. “And he’s already wanting to play baseball next year too.”
“And I want to play football,” Carter added with a smile.
Sports can complicate things for a type 1 diabetic because increased activity will cause a person’s blood sugar to drop.
“That will be a big learning curve for us,” admits Melissa.
But the family is up for the challenge.
The Woodruffs knew early on after Carter was diagnosed with type 1 diabetes that they wanted to do everything they could to help raise funds for continued research and finding a cure.
“We found all of our resources, all of our help from JDRF,” said Melissa. “They gave us phone numbers of other families who’ve been through this . . . they gave us recommendations for school, 504 plans, what is it, what do I need to fill out . . .”
So the Woodruffs wanted to give back what they could, so they created a fund-raising group they call “Carter’s Crew.” They held their first events over the summer, including dining to donate events at Culver’s and Applebee’s, both in Eureka, and a basket raffle at Schnucks in Washington where they spent months collecting donated items from local businesses.
The basket raffle raised over $1,000.
The family established a Carter’s Crew account at Bank of Washington, where it deposits funds from these events to donate to JDRF at its annual walk. This year’s walk will be Oct. 6.
“We feel one day there will be a cure, and we want to feel that we’ve contributed to that,” said Melissa. “Anything to help (Carter) as far as furthering research, to help him along the way is going to be beneficial.”
“Carter’s Crew” has two fund-raisers planned in the coming months. The first is a trivia night to be held Saturday, Oct. 19, at the Hummingbird Club in Washington. Doors will open at 6:30 p.m. and the trivia begins at 7 p.m.
Then in March the Crew will hold a dinner and dueling pianos event called “The Key to a Cure” on Friday, March 21, from 6 to 10 p.m. at the Knights of Columbus Hall in Washington. Doors open at 6 p.m. and dinner will be served from 6:30 to 7:30 p.m.
There also will be a 50/50 raffle and silent auction. There will be 350 tickets available.
For ticket information, people can call Melissa Woodruff at 314-540-1169.
This “Key to a Cure” event will be the biggest fund-raiser “Carter’s Crew” has taken on, but the Woodruffs say they want to raise as much money for JDRF as possible. In fact, Matthew Woodruff said he’s already thinking of other fund-raisers, like a sports tournament.
“We’re toying around with an idea like that for next summer,” he said.
“We’re pretty much committing from here on out,” said Melissa, noting the family is already looking for a larger house so they can have an office area designated for their work with “Carter’s Crew.”
“We want to be able to contribute a huge chunk of our time to ‘Carter’s Crew’ and do fund-raising and all of that on more than just a part-time basis.”
Both Melissa and Matthew had second and third jobs, but they have let those go so they can have more time for Carter and the “Crew.”
“You don’t want to stop because what if right around the corner is a cure or new medicines,” said Melissa. “It takes years for new medicines to come out.
“And it’s been a lot of fun for all of us too, to meet new people, plan the events and get out in the community.