Health Management for a Lifetime

Management of diabetes is a lifetime commitment and how well one manages his condition determines his future health. A good method to assess the management is to check the HbA1c, which essentially shows on average the blood sugar level over the last 3 months. Glucose naturally attaches or glycates to red blood cells and therefore people without diabetes would then have 4-5% of their red blood cells glycated with glucose which is a blood glucose level of 65-100 on average over the last 3 months. The % of red blood cells glycated can then give an indication of how well diabetes has been managed for the last 3 months, the lifespan of a red blood cell. The American Diabetes Association would like people with diabetes to have their HbA1c level to be less than 7% which on average is 170 blood sugar level or lower. We tested all the kids and the majority of them ended up with an HbA1c of 10-17%, which translates to an average of 275 to over 400 glycemia over the last 3 months. i have serious concerns for the child whose HbA1c is at 17%, which is at a deadly level. I asked Leonardo's mom what his was and she told me 14% or on average 410 daily. She seemed quite disappointed with the number and understood the implications. I received the sense that she would do everything possible to lower it over the coming months. Despite his high HbA1c, he seemed much happier and healthier than when I first met.


In fact, the entire crew from Santa Elena seemed upbeat although maybe not so evident in this picture.
 

So, how do I sum up such an eventful and meaningful experience? I'm not sure. These kids became such an important part of my life and I had to really watch over theirs especially at night. Feeling as though I helped Leonardo have a brighter future was the most worthwhile part of it all. I honestly am not sure he would have survived in the long run if we had not intervened, corrected him with insulin when he was over 600 and brought him and his family to the camp. At least now they have the tools to manage his healthcare appropriately and the insight to know that they still have much to learn. The rest of the campers wept when they said their goodbyes to each other. The friendships they made as well as the love connections will continue on as will their desire to better improve the management of their diabetes.



Not only the kids, but also the other volunteers developed friendships that have carried over into the Facebook age and will prosper on as we hold our reunions.

By the end of camp, I like the rest of my friends had literally passed out from exhaustion. After everything that had occurred from the emergency appendicitis of one of the campers, which I never really discussed, to the potential swine flu spread, to the raging pre-teen hormones, we were all ready for a long afternoon nap.

Meal Times Kid Style

Meal times are not just about eating and counting carbs, but also about having fun! To shake things up, we had the kids engage in different methods of eating. I felt obligated to participate as well despite the messiness and I'm glad I did since I had forgotten how enjoyable it is to just be a kid, get dirty and not care.

One evening, we had to eat our spaghetti with only our faces. Grabbing the spaghetti meat balls were easy, but Kevin mastered slurping up the noodles.
Another night, I taught the kids how to use chopsticks and I lauded them on their magnificent attempts.We even ate blindfold. Thank goodness it was only a hamburger!
After dinner, we read the traditional mailbox messages. I received a love note from our Dr. Nick, although, I'm pretty sure one of my kids wrote it. The girls and boys giggled at all the funny notes and I watched cupid at play. Carmen, Kristen and JuanJo even dressed up nicely for the part of reading the messages.
After the mailbox, Susanna gave out prizes to kids who had accomplished something significant that day. For example, when one of the girls, age 5, injected herself for the very first time with insulin by herself, Susanna gave her a barbie for that accomplishment and everyone cheered wildly. I am so impressed with these kids and all that they mastered over a week!

Santa Claus with Milk and Sandwiches

Evenings are always the most interesting for us since we perform night checks to ensure that the kids' blood sugar levels are not dropping that low. When the blood sugar drops too low in the night, the kids can start convulsing. Therefore, at the end of their night activities around 10-10:30pm, we give the kids their nightly dose of insulin as well as provide nightly snacks to ensure that their blood sugar remains at a good level throughout the night. Given all the exercise each day, we don't want them dropping low while they sleep.
At about 1am, we gear up for the nightly checks bundled up in warm clothes and ready with our headlamps. Given the timing of when different insulins peak, we need to check their blood sugar level around 1am to make sure everything is ok. We have set protocols that we follow. If their blood sugar level is below 55, we give them a full glass of coke to raise their blood sugar immediately and we check it again 10-15 minutes later. If it rises to above 70, we give them a sandwich and a glass of milk to sustain their blood sugar over the long run of the night. Any blood sugar between 55-70, we give a half glass of coke and when they rise above 70, we give them the sandwich and milk. Between 70-120, just the sandwich and milk. The most critical ones to watch are those who drop significantly from their 10pm blood sugar to the check at 1am. Even if they are at 130, but they were originally at 350 at 10pm, we need to give them food to ensure that they don't continue such a harsh drop.
The kids usually don't wake up when we prick their fingers and check their blood sugar levels however pulling their hands out from under the covers is sometimes tricky. They groan and move around and so we have to wake them up if they continue to be uncooperative. And if they are low, we have to give them food. We almost had to force feed Kevin in the photo below when he kept whining that he would throw up on us and refused to eat. He realized in the end that he needed to obtain the necessary carbs for survival once he woke up a little more. After much complaining, he ate it all and did fine the rest of the night.
However, if there are kids whose blood sugar levels still need to be monitored, we end up staying awake until 3am to make sure they are still ok. I only had one night where I ended up awake until 3:30am and then had to wake up for morning checks at7:30am. Others had rougher nights and were up until 5am because they had kids who needed to be monitored yet again. Despite the lack of sleep, I enjoy night checks the most since I find the process pleasantly peaceful to check their glycemias while they sleep in the dark. I feel like Santa giving them milk and sandwiches even if they don't want them.

Being Just Like One of the Kids

Our primary goal for camp was to create a camp for kids and second to encompass diabetes education. This may seem counter intuitive to the basic premise of a diabetes camp, but it is important to realize that these kids are just kids and we wanted to make their experience not only educational, but also entertaining and interactive.
Since my usual role at any hostel is social coordinator, I thought it only fitting that I help organize the night activities. On the second night, I organized the game, Busca el Gringo, which is essentially go find the gringo like hide and seek. I hid 9 gringos throughout the camp site and each group had to find them all. The first group to find each gringo received the most points with less for each group after.

I placed Carlo up a tree and felt bad later when he almost fell out of it. I stuffed Kendra inside a trashcan she's 4'10'' and could fit inside. I put April in a cupboard, Merith behind some curtains in the auditorium where we started the game, Corey in a shack, Jackie in a flower bed, Nadine in the bushes, Natasha behind the cabins and Randy found his own spot behind a whiteboard. I think I made the game too hard because the kids took awhile to find the gringos, but when they did, they were so thrilled! It's similar to the feeling of finding the big Easter egg on the egg hunt. The game was a smashing success and everyone had fun especially the hiding gringos.
For the other night activities, mainly Kristen and Carmen organized them because I fell seriously ill. I was so ill I laid crying in my dorm unable to get up to get medicine from the docs. Thankfully, Caitlin found me and retrieved the medicine for me. I thought I had swine flu, but Nick, the doctor, said it was just a viral infection despite my sore throat, coughing, runny nose, body aches, fever and lack of appetite. So, I spent much of the next 3 days bedridden. Many others fell ill during the week as well. Sadly, Randy ended up being quarantined at the Quito hospital for several days after his host family took him there. He almost missed his flight home because the doctors had to blood test him for swine flu. I'm glad no one took me to the hospital.

Kristen and Carmen created a flurry of phenomenal activities including the talent show, twister, costume party and dances. I only wish I had felt well enough to participate more than I did. My kids felt bad that I was so ill, and I was careful not to infect them with whatever I did have. Thankfully, Jairo and James took the reigns and watched over the kids without me until I was well enough to join back in.
Despite being MIA for most of the week, the crew remembered my bday and made a cake to celebrate. They asked me to come to a meeting where they presented the cake and I received my sugar high.
Other groups organized the sports and arts activities. All in all, the kids were just kids and learned how to better manage their diabetes in the process of having fun. And I had fun just being like one of the kids.

My Boys

For the week, I was responsible for a group of 12 13-14 yr old boys. I shared responsibility of the campers with Jairo and James along with Fernando, a local boy with diabetes too. Honestly, much of camp is a blur. Every day we had sports, arts, education and night activities to keep the kids busy. Our day started at 7am and ended sometimes well past 3am when we performed night checks.

My boys as I called them referred to me as doctora chan from Grey's Anatomy instead of juguete the name I had given myself. I thought it was funny and later they just shortened it to doctora. I fell in love with these kids especially Kevin who was just as camera happy as me.
At times I did want to scream. Gustavo in particular drove me crazy because he refused to wait for the other campers, for lunch, for really anything. And then there was Fernando who was suppose to be a monitor, but acted like a camper and so we had to demote him since he became a distraction. The rest of group did just fine and really bonded together.

They learned a great deal in their week, better techniques for injecting insulin, how to count carbs, understanding the pyscho social aspect of having diabetes and just learning that they are not alone and that diabetes is just a lifestyle and not a disease for them.

More than anything, they learned from each other. I could tell them what to do, but I don't lend a lot of credibility with not having diabetes myself. However, by watching the other kids, their fears of injecting in certain places lessened. In fact, Carlos Andres injected himself in his arm for the very first time on the last day of camp. And Juan Carlos who never used rapid insulin learned a great deal from his peers too.

Our living situation consisted of dorm beds in cabins. The boys separate from the girls and so I stayed with the 12-14 yr old girls next door to the boy's cabin. Most nights I had to separate the girls from the boys and send them to bed to which the boys always used my full name doctora chan and whined about it. I served as bad cop while Jairo was good cop.

Road Trip with Insulin

I've been so over bus rides for awhile now, but I thought I might enjoy the 14 hr bus trip from Santa Elena on the coast to Quito with a bus full of kids. The 4am departure time did not agree with my internal clock, but I was awake and ready for the adventure. Jairo and I bought and brought our supplies the day before; honey and coke for emergencies in case the kids blood sugar goes low on the trip, glucagons, insulin, syringes, alcohol to clean, lancets, glucometers, cotton, snacks, fruit, food, water empty plastic bottles for the syringes, and our energy for the long trip.

At 4am we collected a few parents, one of whom brought her newborn, and a few kids. We then drove off and picked up awaiting parents alongside the road. Once we had collected the kids from the Santa Elena group, 7 in total, we checked their glycemias. Leonardo's was still high at 485 and so we corrected him again on the bus. All the kids from Santa Elena were young ones ranging from 3 yrs old to 7 and all came with their parents to camp. At 7:20am, we made it to Guayaquil where we picked up the rest of the crew. Another 7 kids joined up including Juan Carlos and Ayisha and her dad.

During our road trip, we checked glycemias along the way. Arturo, a 25 yr old who has had diabetes for 2 years, had a high glycemia, over 400, but he didn't want to correct for it. He's been living with diabetes and never uses insulin only when forced to at the hospital when he's really sick. I didn't realize his history until after I made him inject himself. We told him that these 5 year olds on the bus can inject themselves and so if they can, he can learn too. He watched Francesco, a 7 yr old boy inject himself and then he followed suit. Jairo helped him a bit by grabbing some fat in his arm for the needle. He did ok with the whole process but winced at the sight of the needle.
During the lunch break, we stopped to check glycemias and distribute insulin. Unfortunately, many of the kids had fallen low at this point and so Jairo, Maria Fernanda and I had to distribute coke to half the group to get their levels up. One kid was really low at 50 and of course Jairo was low at 45. Jairo always seems to overexert himself and drop and so despite his monitor status, I'm always asking him what his blood sugar is to remind him to check himself.

Leonardo and Yannina, 3 yrs old, especially hated the shots and screamed the entire time until it was over. Checking blood sugar is quite the ordeal too since both hate having their blood sugar checked and crunch up their fingers to prevent the prick. Despite the screaming and wiggling kids, we managed to take care of them both. Jairo was great with Leonardo and made him watch as Jairo checked his own blood sugar and injected insulin into himself to help Leonardo understand that it isn't painful and there's no need to scream.

After the lunch time lows, the rest of the 14 hour road trip went a little smoother. Although, we spent the last hour circling around the city trying to find the camp site. I became so car sick from this last hour that immediately when we arrived, I went to the bathroom and threw up. All the color had drained from my face and everyone thought I looked quite pale and on my death bed. I didn't realize at the time, that this might be a warning sign of my health for the coming week.

A Lack of Education is Worse Than a Lack of Insulin

This morning, Jairo, Maria Fernanda a mother with a son with diabetes and I hit the road to the coast to organize for our long journey. Along the way, we picked up Sra. Rocio who has 2 boys with diabetes. She told of us another family who has a boy, 4 yrs old, who is having trouble with his diabetes and she thought his blood sugar might be high. So, we hurried over there and made a cold call visit.

We listened as the family told us that Leonardo always cries, doesn't feel well, has lost a lot of weight, is always thirsty, and always has to urinate. Sure signs that he has hyperglycemia. After explaining the objectives of the camp that leaves tomorrow at 4am and the necessity to have them educate themselves on how to better manage their child's condition, we tested Leonardo's blood sugar. His blood sugar was so high that the glucometer could not even read it. It just said in bold big letters "HIGH GLUCOSE, over 600". He was off the charts. We needed to do a correction and give him insulin to lower it immediately. But we continued to talk to the family to create that relationship. After we answered their many questions about insulin and calmed their fears that it isn't bad for Leonardo, they allowed us to correct him. We stressed the extreme negative consequences of having such a high blood sugar. I really was fearful for the kid that he might pass out into a coma at any second. We gave him 7 units of rapid insulin to bring him down assuming 1 unit for every 50. We didn't want to drop him down to a complete normal level since he probably is always high and we weren't sure how he would handle having a more normal blood sugar at once. Plus, I'm not a doctor, and we just wanted to get his level lower than what it was currently. His family actually has insulin, only the rapid one, but doesn't use it every often and only checks his blood sugar every few days. A lack of education is worse than a lack of insulin since they don't always use it.

After about an hour of passionate pleading on behalf of Maria Fernanda, the family agreed to bring the mom, the aunt and the child to camp tomorrow. We stressed that the week long camp is completely free including all medicine, food and accommodations in case that was a deterrent. I'm so, so glad they are coming. Leonardo is the child with the overalls in the photo. He is so skinny and desperately needs help. At camp we will have a program just for the parents to teach them skills to help their child. I know we can help them.

Diabetes Outreach

In an effort to reach out to the communities, we split up into 8 teams to scour the country for new cases of kids with diabetes, create relationships with endocrinologists, and maintain the relationships we have with the camper families. Jairo, Kendra and I went to Guayaquil with somewhat of a plan.

Due to competing organizations that are for-profit whereas we are non-profit, we lost a few kids to a competing camp conveniently being held on the same dates as our camp. However, Kendra, Jairo and I did find a few new kids to add to our camper list. So, how do we find these kids? We visited various hospitals and clinics and just asked the local diabetes educator, endocrinologist or pediatrician if they happen to know of any kids with Type I diabetes. The hospitals varied from the very rich and private to the government funded and crowded. For better or worse, the doctors have no patient privacy issues and freely gave us the kids names, their phone numbers and the names of the parents. Next year, we could do a better job of maintaining these relationships so that the doctors give us the names of the kids throughout the year. Many hospitals don't have electronic records so unless the doctor sees a kid with Type I that day, they won't be able to find the info. After recieving the info, we just then cold-called the kids and set up home visits. The families also, for the most part, don't seem to mind meeting complete strangers who know about their kid's condition. The first family we met has a 5 year old girl, Ayisha. Despite the last minute request to see if she would be interested in attending, the parents agreed to send her after we spent 30 minutes educating them on better ways to measure blood sugar, inject insulin and count carbs. We will need to help her learn to inject insulin in places other than her stomach. The area around that part is becoming hard due to the repetitive injections and the more hard it becomes, the less insulin gets absorbed. From an economic perspective, the parents will then have to spend more money on insulin due to absorption issues. However, if they rotate the sites of injection, she should be fine. She is absolutely precious although a bit closed off. The parents are worried that she will not open up to other campers since she is so shy. I can't wait to see if she does since most kids change quite dramatically after camp.

We also met up with Carlos, a 13 year old boy who will be in my camper group. He is extremely skinny and never measures his blood sugar. He only takes the base line insulin and no rapid insulin to account for the increase in carbohydrates. We didn't get a chance to measure his blood sugar during the visit and I will be interested to see what it is on the bus to camp. I think Jairo convinced him to come by mentioning all the pretty girls who will be there. The parents even laughed at that comment.

We found a few more campers who can not make this camp, but might be able to come to the next camp, strenghthened relationships with doctors and reconnected with old campers. One of our campers will make a public announcement on the radio where she works about diabetes and the camp. Yeah!

In-between visits, Jairo and I had lunch at the Malecon, a boardwalk that is pretty touristy but with a beautiful view. We are pretty beat overall from all the cold calls but overall excited for camp. Tomorrow, we head to Santa Elena to meet with campers and then take the 4am 11 hr journey to camp where we will meet up with other campers from around Ecuador.
We went shopping tonight for all the snacks and honey and cola for emergencies. I just hope we didn't forget anything. Can't wait for the journey!