Considering An Insulin Pump

The doctor told Andrew that he had to use shots for his insulin for at least the first eight months. After that, he could switch to the pump if he wanted to. The pump has some extra features, more precise measurements of small amounts of insulin, and allows for more flexibility. It also requires that you carry a pump full of insulin attached to your body all the time. You have to figure out a way to wear it when your clothes have no pockets, how to sleep without getting tangled in the wires, how to run and play without pulling it out, how to use the bathroom while holding your pump, etc. I hoped for the advantages of the pump, but I wouldn't have to wear it 24/7. Going to a pump would have to be Andrew's decision.

Kaitlyn tests positive!

I was proud of Kaitlyn for wanting to participate in the research study. I didn't think much about it again until my negative results showed up in the mail & hers didn't. Nothing the next day or the next. By the time the phone call came, I knew what was about to be said before she said it. Kaitlyn tested positive for the antibodies associated with type 1 diabetes & qualified for stage 2 of the study. They did a genetic study to see if she had the protective gene. She doesn't. Although testing positive doesn't guarantee that she will get type 1 diabetes, she is in the highest risk category with a 50% chance of developing the disease in the next 5 years. She has a beautiful attitude about it! Every 3 months, she willingly fasts overnight and while we drive to Nashville for an oral glucose tolerance test. They take lots of bloodwork & watch her closely. So far, everything looks good. She likes participating because she feels like she's helping science and because they pay her $50 for her trouble. Andrew wanted to know why she gets paid for an IV every three months and no one pays him for 4 shots a day!

Kaitlyn enrolls in TrialNet

After Andrew's diagnosis, Kaitlyn was the first to enroll in a research study called TrialNet. It is a voluntary study (the kids over age 5 have to want to do it) following the close relatives of type 1 patients. It is a great study and has helped researchers learn a lot about the disease. For example, they have found antibodies only associated with type 1 diabetes & have seen that these antibodies often exist for a long period of time before symptoms occur. These antibodies seem to be created as the islets in the pancreas are being destroyed. The pancreas will function normally until it gets down to 20% of the islet cells. They've also found that some people have lots of the antibodies, but never get diabetes. Genetic testing has shown that there is a "protective gene". People with that gene seem to be immune. Kaitlyn wanted to participate & help find a cure for Andrew. One by one, each of the other kids have done the same.

Non-Medical Adjustments

Andrew had lots of adjustments to make. Here are just a few:

The school nurse wanted him to have a bathroom buddy - just in case.

He got left out of the first school parties because the teacher didn't know what he could eat.

Friends were scared to invite him over to play. I was afraid to let him go.

People will stare at you if your mom pulls out a shot in a public place & you can get too old for the ladies' restroom.

It's hard to play ball if the excitement shoots your BG up very high. It's also scary if your BG goes too low. If you're playing third base & try to tell the other team's coach that you're low, he probably won't know what you're talking about!

Most of these issues have resolved, but there is one more still:
You have to carry a bag of supplies EVERYWHERE!!! He can't even go on a bike ride without a meter & sugar source.

Realizing I'd missed more signs

I was blindsided by the diabetes diagnosis, but the more we learned about his body, the more I realized we'd had symptoms for awhile. I had been worried about basketball. He'd been very emotional on the court & my "mom-radar" kept saying something was wrong. After basketball, he would go back to his normal self. Once we were monitoring BG, I discovered that his BG goes up during competition & triggers the emotions. After the exercise, his BG goes down & my sweet child returns.

One discovery I made was on the last day of school when the scrapbook came home. His first day picture had looked horrible! I remembered thinking, "He's so nervous that he looks sick!" I recognized the look now - high BG probably really from being nervous. At the bottom he was asked to fill in some blanks including I felt "hungry ." Yes, excessive hunger is a sign of high BG!

Will I Have To Give Up TV If I Go To The Bathroom?

About a month after Andrew was diagnosed, his BG was running high. The body tries to get rid of the extra sugar by frequent urination. During the service, Andrew leaned over and whispered into my ear, "Will I have to give up TV for the rest of the day if I go to the bathroom?" I felt horrible! No, I hadn't noticed frequent trips at home prior to diagnosis, but he had a bad habit of leaving the church service during the sermon. I thought he was just looking for a distraction. Then Ryan started asking to go too. I told them to start going before church. If they forgot and distracted the entire church body, they'd have to give up tv for the day. Ryan suddenly was happy to stay in church, but Andrew left anyway. I remember thinking, "Wow, it must really worth it to him" because it happened more than once. Turns out, for the first year or so, his BG always ran high at church. We even made him run laps up and down the sidewalk before church to help!

School Lunches

We were lucky in that, after the first two weeks, Andrew was able to eat school lunch. Some diabetic children are forced to take their lunches forever because of the problem of carb counting. That would have killed Andrew! He loves a hot lunch. His school nurse made a stack of cards for the teacher where she writes down everything on his tray. When he finishes, he takes his tray back & she records the percent of food eaten. He takes the card to the nurse for carb counting & insulin. It's a great system & none of his teachers have complained about it.

However, when he was first diagnosed, the teacher had Andrew pick a friend and come eat at the teacher table where she could be sure he wasn't trading food, etc. She only had his best interests in mind, but Andrew did not want to be removed from all the other kids & made to eat with the teachers forever! I insisted that he be able to eat with the other kids. Andrew had to adjust to living a "normal" life with diabetes, and the beginning was so important to guiding his attitude. Giving up the ability to eat with other kids wasn't going to do. I only have a few years to manage diabetes. Andrew has his entire life. I feel like if he learns how to do the things he cares about while taking care of his diabetes now, he'll be more likely to take care of it himself later. I tell him that he can do anything the other kids can do. But I admit that sometimes it's hard to figure out how to make it happen!

Can't Eat When You Want To

Andrew was less frustrated by what he was and wasn't allowed to eat than when he was allowed to eat it. He was in the middle of basketball season when he was diagnosed. He is so competitive that his blood sugar goes up when he plays sports. Do you really want to give a kid with BG in the 300s that aftergame snack? Remember though that high BG makes you cranky & hungry! This issue is much better now that he is on the pump, but we're nowhere near that in the story. He was only allowed to have a shot every 3 hours, so that meant he couldn't eat more than a light snack if he was within 3 hours of a meal. The dietician talked to us about family traditions we thought we'd like to keep. One was the family trip to Bruster's for ice cream. We thought we would try it, but we'd have to have his lunch done early enough to wait 3 hours for ice cream & then have dinner 3 hours after the ice cream shot. Long story short, it's been over a year and half & we've still never eaten there as a family. When Gene & I went on a date once, I asked if they had nutritional information on their ice creams. The gentleman behind me assured me that I really didn't want to know. I assured him that, yes, I really did! That's okay. We can save that money for diabetic supplies!

Honeymoon

Andrew was headed to bed two weeks after his diagnosis & his bedtime BG was 70. Less than 70 is low, so I fed him & almost sent him to bed. The Lord must have led me to recheck & his BG was 49! He continued to stay low despite juice, so I called the doctor on call. He was kind & reassuring but brief. Soon the phone rang again. The doctor said, "I didn't realize from speaking with you that Andrew was a new diagnosis. When I went to put him in the computer, I saw his diagnosis date. I think he may be honeymooning. How is he now?" He was still low. "I don't mean to alarm you, but how far are you from the nearest hospital?" 20 minutes. "Don't go yet, but I want you to find your car keys. Keep doing what you're doing, but if he gets worse or refuses to eat, I want you to put him in the car & go straight to the hospital. Have the E.R. call me as soon as you get there." We were able to manage it at home, but I don't think Andrew had ever had so much sugar in one night! Every fifteen minutes, we gave him juice, candy, soda, anything that would raise his BG. It took over an hour to get him over 70. Too bad that he didn't feel well enough to enjoy it.

Type 1 diabetes kills the islets in the pancreas that produce insulin. I believe the doctors said that you won't have symptoms until you get down to about 20% of your islets left. The little bit of Andrew's pancreas that could make insulin appreciated the help it had been getting and was ready to make insulin again! That is the happy part of the honeymoon in the sense that it requires less insulin to manage BG. This night, it also meant that Andrew suddenly had too much insulin. One silver lining from the episode was that I was able to shift Andrew's Lantus (24 hour insulin) shot from evening to morning as a friend had suggested. Even though he took 2 shots at breakfast, it felt like only 3 shot sessions a day instead of 4.

No One Could Watch Andrew

Less than a week out of the hospital, Will came down with a stomach virus. I took the rest of the kids to Ryan's basketball practice to avoid the germs. Honestly, I wasn't doing well. I was 6 months pregnant, very sleep deprived, and emotionally and physically drained. After talking to a friend about what was going on, I went to the bathroom to try and pull myself together. There, I discovered that I was spotting worse than I had with the miscarriage. I really thought I was going to lose Ben from the stress. I figured the doctor would tell me to go the hospital, but that led to the next question: What would I do with Andrew? We hadn't had time to train anyone on measuring & drawing up insulin, counting carbs, how to handle lows, etc. I really didn't want to go to the hospital alone, and I just fell apart. Thankfully, when I went home and laid down, the bleeding stopped. It helped us realize that we had to train some help! I was having a baby, and sooner or later, both Gene and I would be heading to the hospital.

You Never Get a Break!

Shortly after Andrew was diagnosed , I talked to a adult friend living a seemingly healthy life with type 1 diabetes. He is a wonderful role model, and a great example of the godly kind of man I hope to see each of my boys grow up to be. I think he summed up how I feel about the disease now when he said, "You just get really tired of it because you have to think about it all of the time. You NEVER get a break." He was so right! We have to think about diabetes every time Andrew eats, every time he plays, and even when he sleeps.

Counting Carbs

Although Vanderbilt asked us to start carb counting in the hospital, we didn't start using them to measure insulin until we returned for more training. That's when we got the carb ratios our school nurse was expecting. Low carb diets sometimes help people with type 2 diabetes because they still make insulin. Type 1 diabetes is an autoimmune disease that kills the insulin producing islet cells in the pancreas. No amount of dieting will ever make them work again. Andrew needs insulin whether he eats a regular meal or a low carb one. A healthy pancreas automatically matches insulin to food intake. We get to be Andrew's pancreas. We read labels to find the number of carbs in everything he eats. Currently, he takes 1 unit of insulin for every 12g of carbs that he eats at breakfast, 1 unit for every 18g of carbs he eats at lunch, and 1 unit for every 17g of carbs he eats at dinner. He can eat anything except liquid sugar like sodas, juice, or pancake syrup as long as he counts the carbs. That makes every meal a math problem where we measure serving sizes & carbs. Andrew already has some pretty good fraction skills! For example, he knows that a serving size of Honey Nut Cheerios is 3/4 of a cup and has total carbohydrates of 22g. He likes more than that, so he eats 2 servings, which is 1 1/2 cups and 44g. He measures his cereal with a 1/2 cup measuring cup & takes 3 scoops. Milk also has carbs. He usually pours about a cup into the bowl, but about half gets left behind, so we only count 6g for the milk. That's 50g, which is 4.15u of insulin if eaten at breakfast, but only 2.80 if eaten at lunch. His body is more sensitive to insulin at different times of day that typically have different activity levels. Then we add or subtract insulin based on what his blood sugar was before the meal. My kitchen has changed quite a bit since Andrew's diagnosis, with many of the changes being quite comical. One new rule: No trash with labels gets thrown away until after the meal & all carbs have been counted!
P.S. A must have for carb counters: The Calorie King Calorie Fat & Carbohydrate Counter

Insulin is a lifesaver, but not a cure.

If it wasn't for insulin, Andrew would already be dead. Insulin shots have been around for less than a hundred years, so it's a very sobering thought. We are very thankful for the role insulin plays keeping Andrew healthy. However, it is not a cure & it is not without risks. Too much insulin will send the blood sugar too low. The brain needs a constant supply of blood sugar for energy and quickly begins to starve if the BG drops too low. Too much insulin can cause disorientation, seizures, coma, and death all pretty quickly if not treated. Some people prefer to let their BG run a little high rather than face low BG. High BG over a period of time, however, can cause heart, kidney, eye, & nerve damage. Since BG is affected by food, activity, growth hormones, stress, illness, etc. it's not always easy to balance insulin needs.

A Failed Attempt To Return To School

We picked up Andrew's long list of medical supplies the next morning, took them home to organize them, and then prepared a box for the school nurse. We walked in with Andrew, his school orders, and all the supplies and met the school nurse for the first time. She looked over his orders, asked a few questions, and then told us that she didn't feel comfortable just glancing at new orders like this & being able to keep our son safe. We ended up leaving with Andrew. I remember looking at Gene & commenting, "We're not in Kansas anymore!"

In all fairness to the nurse, who we came to dearly love, we must have been a school nurse's worst nightmare. We walked in with Andrew, fresh from the hospital, with BG still running in the four or five hundreds. He had never had a low blood sugar in his life so he wouldn't recognize one and he had orders that said let him eat whatever he wanted & give him 2u of insulin! When she asked about carb ratios, we didn't know what she was talking about. When we left, she called Vanderbilt. They explained how we were still being trained & would learn about carb ratios in a couple days.

Home to Jealous Siblings

We left the hospital Monday evening & arrived home after the other kids went to bed. Andrew couldn't wait to see the kids in the morning and show off his stuff - old baseball cards from the courtesy cart, a stuffed Vanderbilt Champ mascot, and his "no-no" that covered his IV. Andrew wanted to put the no-no on & see if he could trick the kids into thinking his arm was broken. He also happily shared that he got to play in the playroom with Gene on the Playstation. I was proud that of all the horrible things he had been through, he chose to share the few good moments. We were in such constant training that he literally only got to play in the playroom one hour the entire time. The social worker had already told us that it was normal for siblings to be jealous of the constant attention required to manage diabetes, but we weren't expecting it to set in that fast. The kids felt like Andrew had been off having a great time with Mom & Dad's undivided attention while they sat at home without us. It didn't help that the training had only started and we were on the road to Vanderbilt quite a bit in the early days.

Going Home

Andrew's BG was still running high when we were getting ready to go home. The night before, the meter read, "High, over 600" twice. Normal pre-meal BG is between 80-120. I remember asking, "Is it really okay for him to go home?" Andrew was worried too. I remember him asking me, "Am I going to die?" They printed out a full page list of supplies he would now need for us to take to the pharmacist. We weren't sure we were ready, but we did want to be back with the rest of the family. We only had to make it a couple of days before we would return for more training.

Middle of the Night Screams

In the hospital, Andrew tolerated the shots better than the finger pricks. The hospital didn't have the needle lancets, but rather the blade type. Andrew checked my blood sugar with one, and it did hurt much more than the needles do. One evening, we were all sleeping when a nurse decided to check Andrew's BG without waking him. He woke up from a deep sleep screaming and scared to death. At the time, I thought it was horrible & promised him that I would never do that to him. Now, a year and half later and still needing to check his BG in the middle of night, I have had to change my mind on that one. I tell him to try to sleep through it, but if he wakes up he can do it himself. He wakes up most of the time. I can't remember the last time the poor guy got to sleep through the night. One of the worst parts of this disease is the exhaustion that comes with it.

Diabetes 101

The next few days were a blur of learning. I felt overwhelmed with information, but I can see now that they were incredibly patient with us. First, we had to learn how to give shots. I thought I'd never be able to give someone a shot. However, if your son will die without them, you can learn to give a shot! Andrew wasn't excited about being the guinea pig for two people who had never given shots before, but he didn't have a choice either. We learned how to measure insulin, how to calculate correction doses for high BG, how to count the carbohydrates in a meal, what he could eat, and how to give glucagon if his BG dropped too low. We had visits from the child psychologist to help Andrew adjust, someone to help us deal with all the insurance copays we'd be paying, & someone to advise us for school issues.

Good! You're Math People - He will be okay!

Once Andrew got his own room, more than one nurse commented that it was good that we were "math people", because that meant he would be okay. I thought that meant that if we learned all the formulas and followed them, Andrew would have great blood sugar numbers. Turns out, we are considered to be doing well if 75% of numbers are in range. The comments came from the fact that from now on, every meal or snack that Andrew eats will be a math problem and mistakes can be devastating.

Lucky

Andrew responded to insulin well and soon cleared his ketones. He was able to move out of the ER by Saturday afternoon. He was really lucky. Lots of kids are really sick when they are diagnosed, and some don't make it. We are thankful for the bedwetting that tipped us off. Lots of kids' blood sugar and ketones get so high that they start vomiting. Normal parent response is to offer liquid sugar, which is not good if you're vomiting from high BG. Parents don't realize it's not a virus until the kids start having trouble breathing. New rule in our house: No one gets soda or juice when vomiting without taking their blood sugar first.

Mom, how long does it take for diabetes to go away?

That Saturday was definitely one of the hardest days of my life. I was trying to process, while pregnant and sleep deprived, that my child had a lifelong illness. He just lost ten years off of his life expectency. He was at risk for heart disease, kidney failure, blindness, and amputation and would need constant monitoring for the effects of high and low blood sugar. Still, I think the most heartbreaking moment of the day was when Andrew crawled up in my lap and asked how long it would take for diabetes to go away! He'd been such a good sport about everything, that I never thought about the fact that everything he'd ever had before got better. It was so hard to hold my sweet seven-year-old needlephobic son and tell him that diabetes never goes away and that he would have to take these shots and finger pricks for the rest of his life.

At least 4 shots a day

Things were very busy once we got to the hospital. It was 5 am before any of us got any rest. Then we only got an hour or two of sleep. Dr. Mathew came in and confirmed that Andrew had diabetes and would need at least four shots of insulin a day to survive. We would have to learn how to give shots and watch for high and low blood sugar before Andrew could leave the hospital. We tried to learn as much as we could, but the information was coming at us so quickly that it was hard to absorb all at once.

Arriving at Vanderbilt

When we got to Vanderbilt Children's Hospital, I handed the nurse Andrew's paperwork & told her that our doctor had sent us. She looked down at the paperwork and then at Andrew and said, "And he's just walking in like that?" I had no clue, so I replied, "Is he not supposed to?" Understanding came over her eyes as she asked if he was a new diagnosis. She asked me to sit in the waiting room, but they called us back as soon as we sat down. They took Andrew's blood sugar (BG- blood glucose) and it was still in the upper 400s. The nurse had her calm nurse voice on and said she would take us back. She stopped by the insurance admitting desk and calmly said, "These are the Coxes. I'm taking them to Room 1." They were so busy that we walked past patients waiting in the hallway. They placed Andrew in room 1 right across from the nurses desk and had heart monitors on & an IV in before anyone even asked if we had insurance. Andrew didn't know any better, but I knew this wasn't normal. I was starting to realize that this was about more than a low carb diet.

Getting Ready To Go

Getting ready to go to a hospital in another state for 5 days when you have 3 other children is not an easy task. Gene's Dad agreed to come stay overnight & my mom was going to take over when she wasn't working. A dear friend volunteered to get groceries for them. We made arrangements as fast as we could & tried to settle the other kids, but it was still after 9 pm when we left town. I didn't know then how dangerous each of those hours were. The Lord protected Andrew! I knew from reading low carb diet books not to feed him any carbs. He had chicken & diet coke for dinner. He was a good sport about anything we asked him to do!

On the School Bus

The math team had just won first place and we were on the way home when my cell phone rang. I was supposed to stop and buy groceries before coming home but Gene said, "Kimberly, where are you? You need to come straight home." He told me the news, but it was hard to process it. Even pregnant and emotional, I didn't cry. I even enjoyed a few minutes of denial thinking surely you can't get that kind of diagnosis that quickly. Denial lasted only until I heard how high his blood sugar was. The good part of being on the bus was that I was travelling with a colleague. He found out what I wanted taught while I was gone & handled the getting a sub and lesson plans for me. I remember telling him, "My life just changed forever" but I had no idea!

At The Doctor

Gene took all four kids to the doctor while I was still at math team. We were just expecting to find out whether or not Andrew had an infection. The news came as a shock, "Andrew has diabetes. He needs to go to Vanderbilt Children's Hospital ASAP. They are expecting him. Expect to be there at least five days. Your other children won't be allowed in his room, so you need to find somewhere for them to stay." The children all circled around Andrew and hugged on him. The scene was apparently very touching, because the nurse and doctor told it to me several times. The doctor has four children of her own. She went home and told her husband that she hoped her children would react the same way in a crisis. I'm glad they did, but every time I heard the story I felt very guilty. At a time like this, the only person not there was MOM. I was on a school bus!

Getting To The Doctor

I had first block planning and was leaving at 10 am to take the math team to a competition at Wallace State. I decided to take Andrew to work with me in hopes that I could get him to the doctor before I left. I called just after 8, but was told they couldn't see him until afternoon. I knew I wouldn't be back until after 5, so I remember asking, "Can I just drop off a sample?" Of course, they said no, that he needed to be seen. I took the latest available afternoon appointment, called Gene about taking him, and then had to contact all the kids' teachers to have them sent to the front office instead of the bus at the end of the day so that Gene could get them all to the doctor on time. I remember feeling like I was making a mountain out of a mole hill.

First Symptoms

On Monday, January 21, Andrew wet the bed. I thought it was strange, but figured it was one of those growing boy problems. Tuesday night, it happened again. We restricted evening fluids, but Thursday night, he wet the bed twice in one night! He had only had one child-size drink that night, so I remember thinking, where's all this coming from? We thought he might have a bladder infection & decided to take him to the doctor Friday morning so that he wouldn't have to suffer through the weekend.

Telling Andrew's Story

Andrew was diagnosed with Type 1 Diabetes on January 25, 2008. The diagnosis came as a shock since no one in our family has the disease. Our lives have changed so much since then. Since Kaitlyn also has antibodies for the disease, but no symptoms (more about that later), we are working with a research team at Vanderbilt searching for clues about the development and onset of this disease. When I asked them what we should do to help the research effort, the advice surprised me. "Tell your story! People just don't understand what these kids go through. They look so normal so they don't get the attention they deserve." That was over a year ago, but I've never forgotten it. This blog is his story.