This is a continuation about my relationship with diabetes. Please read the post Diabetes and me. . . to hear the beginning of this story.
In August I was talking with my son, and I noticed a lump at the top of his chest next to his throat. I asked him to show it to me and I saw the lead wire under his skin going to his vagal nerve stimulator (VNS). He has had the VNS since November of 2004. Up to this time the only evidence of his VNS, was the lump on his chest where the VNS device was implanted, the scar from the surgery, and you could hear a change in his voice when it went off. I knew about the lead that goes to the vagal nerve, but I had never seen it. My first instinct was there was something wrong with the implanted device. Then it occurred to me that he may have lost weight. I had him step on the scales and was shocked to see that he had lost 14 pounds since mid June, which is when he had a physical with our pediatrician. I was really stumped about what was happening.
A few days later, I was at work when my son called me and said he was feeling really sick. He said he had thrown up. I told him I would be home soon. He continued to call me and text me, telling me he was sick. He also told me that there was something wrong with his coke he was drinking. He said it didn’t taste right, and he asked me to pick up some new coke on my way home from work.
When I got home he I could see he was really sick. His face was grayish and he looked really tired. He also was extremely thirsty and was drinking massive amounts of water, which was odd because he never drank water. And then he started throwing up. Once. Twice. Three times. And on and on. I knew he could not continue this way so I took him to the emergency department at the hospital.
After speaking with a doctor and after his examination of my son, he concluded that my son had a virus. He also decided to check his blood because my son is on depakote for his epilepsy, and the doctor wanted to make sure his levels were ok. While we were waiting for the results of the blood test, they gave my son an antibiotic and put an IV drip on him to give him fluids for dehydration. Finally the doctor came back into the room with an odd look on this face. He then said that they found something unexpected. I immediately went into an adrenalin rush of panic. He looked at me and said, your son has diabetes. He said his glucose level was 780. I knew that the normal range should be close to 100.
I was totally stunned, and I am not exaggerating.. At first I just sat there and kept quietly saying to myself, “Oh my god.” Then I asked the doctor if it was type 1 and he confirmed that it was. I immediately knew that this meant my son would have to take insulin shots.
Still in shock, I started to put the pieces together. My son had lost a bunch of weight. Lately, he also had been wetting the bed, which was very unusual. And it wasn’t just once in a while. It had been almost every night for the last 2 or 3 weeks. Plus on that very day, he was very, very thirsty. I also recalled that last spring the school was complaining that my son was constantly falling asleep at school. Typically it was in the afternoon. Now looking back that was also a symptom.
It all added up. I questioned myself. Why didn’t I see this? I really felt guilty. He has been sick, and I didn’t know it. I can’t tell you how awful I felt. He had become very sick and I did not recognize it was diabetes. Adding to the guilt , I was also slow in getting home that day, thinking he was exaggerating his condition. I thought to myself , “what a bad mom.”
It occurred to me the reason I didn’t pick up on what was going on was because he had several other health issues which were all related to one another. I would not have guess he had diabetes on top of everything else gong on with him. Also who would believe I had just been diagnosed with diabetes a month previously?
We live in a really small town which is near a larger city. The doctor decided we needed to transfer my son to Children’s Hospital in the city. With me close behind and still in shock, they took my son in an ambulance to Children’s.
Once we got to Children’s the doctors immediately started treating the diabetes. The endocrinologist saw Jamal and explained to us that he would have to be in the hospital for a few days. He indicated that it would take some time to get everything in a more normal, safe zone. They explained to me what they would be doing. While this is all going on, my son is begging to go home. He kept saying he was ok and he wanted to go home. They explained to him what was happening and it would take some time to get everything all better.
For the next 48 hours, every hour they checked his glucose levels and ketones. Every 3 hours they did an A1C test. His blood sugar slowly came down throughout the night. This improvement continued the next day. During all this time they did not allow him to eat or drink. Not even water. My son begged for something to drink, and he wanted to go home. It took them quite some time to get his glucose level down, his ph back to a normal level, and his keystones out of the dangerous level. Finally after 48 hours they let my son have a sugar-free popsicle. His glucose level were close to being okay, but not quite there yet. So we stayed another night.
While we were in the hospital I let my parents and sister know what was going on. They were shocked. I also had to get a hold of my husband who was on a business trip in West Africa. He was absolutely stupefied when I told him the news. He was really upset. I did not find out until weeks later that he had a stroke shortly after getting this news.
The endocrine department did a good job of educating both me and my son about diabetes. Besides the general information about diabetes, carbohydrate counting and calculation of insulin dosages, they also trained us on how to give injections of insulin. I think I was still in shock and all of this information was overwhelming.
- Use this scale for corrections.
- Use this exchange ratio for his meal bolus.
- If his glucose level is 300 or higher always do a ketone test.
- Call if his ketones are higher than a normal level.
- Special adjustments need to be made if he is ill.
- Insulin needs to be kept in the refrigerator.
- Once insulin is used it is only good for 30 days.
- Insulin can only be given if his last short was longer than 3 hours ago.
- If he eats, he needs to have insulin.
- If he is low, give him 15 grams of a food or drink, wait 20 minutes and repeat the test and the 15 carb rule if it is necessary.
- Make sure there are not bubbles of air in the syringe because it causes the measurement of the insulin to not be accurate.
- Do not take you Lantus in the same place you take your fast acting insulin.
- If his glucose is extremely low, which is 60 or below, use the emergency glucagon injection.
- And I am sure I missed a lot in this list. [Deep Breath]
With all of this information my survival mode kicked in. I absorbed the information, my son’s levels were closer to being normal,and finally we could go home. Thank goodness they gave us a binder of information that we could refer to when we got home.
On the way home, we stopped at our pharmacy to pick up all of the medication and supplies we needed. I have good insurance through my employer, but my share of the bill was over $400. Another shock. I didn’t even know for sure if I had $400 in my account. I wrote a check and prayed.
Finally we were at home. Now it was up to me to take care of my son. It was really scary at first, and a lot of responsibility. My hands shook as I measured his insulin, and shook even more so when I gave him his first injection without supervision.
Meanwhile school was starting in a week and a half. I was really worried about how we were going to deal with all of this at school. In the end he was not able to go to school the first three days. Since then the school has been handling the situation fine, except I think they are overly cautious about low levels. It was also good to know that there are several children in his grade that are also diabetic.
Dealing with the diabetes has become pretty routine. His glucose levels are still erratically jumping all over. One moment he is low and the next he is high. Within about 3 weeks time, my son was testing his blood and giving himself all of his injections. For the short-term insulin, we have been using a pen instead of a syringe, and he still uses a syringe for the long-term insulin. Yesterday we attended our second out-patient training session, which was about recognizing patterns and then adjusting the doses when necessary. Very helpful, and probably will fix the up and down business.
My son’s life has drastically changed. He has already got to the point he isn’t happy to be testing his blood 5 or 6 times a day. Who would be happy? He hates taking the shots, especially if they have to be done with a syringe. He hates the fact his meals have to be more regulated. No more grazing for food. He is struggling to give up juice. The sugar-free beverages have not been a success with him yet. Going out to eat has become a big adjustment too. But my son has done a real good job of testing his blood and taking insulin when we are in a more public area such as a restaurant. He also has become very good at detecting when his glucose level is low. His legs feel funny and his hands shake. He has heard about the research for a pancreas and is anxious for it to happen. He has also learned about the insulin pumps and has decided he wants to go onto one. We are waiting for our appointment this month to have that discussion with our endocrinologist.
Now, perhaps, you can see why we want a cure for diabetes. Four generations in my family have been affected by it. It is scary, and a burden to deal with. But, we have no choice. It is either life with diabetes, or death. And life with diabetes mean a lifetime for my son.
November was Diabetes Awareness month. Scientists have made huge advances toward tackling this disease. They have developed new insulin that is more effective. The work on developing a new pancreas is proceeding. The improvements of the insulin pumps continue. All of this takes dedication and funding. Take a look at these statistics. It is not just my son who needs a cure.
- 23.6 million children and adults in the United States—7.8% of the population—have diabetes.
- Another 57 million people have pre-diabetes
- About 1 in every 400 to 600 children and adolescents has type 1 diabetes
- About 2 million adolescents aged 12-19 have pre-diabetes
- Diabetes was the seventh leading cause of death listed on U.S. death certificates in 2006.
- According to death certificate reports, diabetes contributed to a total of 233,619 deaths in 2005, the latest year for which data on contributing causes of death are available.
- Adults with diabetes have heart disease death rates about 2 to 4 times higher than adults without diabetes.
- Diabetes is the leading cause of new cases of blindness among adults aged 20–74 years.
- Diabetes is the leading cause of kidney failure, accounting for 44% of new cases in 2005.
- About 60% to 70% of people with diabetes have mild to severe forms of nervous system damage.
- More than 60% of nontraumatic lower-limb amputations occur in people with diabetes.
- Factoring in the additional costs of undiagnosed diabetes, pre-diabetes, and gestational diabetes brings the total cost of diabetes in the United States in 2007 to $218 billion
These are staggering statistics. We are all affected by it in one way or another. Please help me to help my son. Please help the world find a cure for diabetes. You can find more information at American Diabetes Association or the Juvenile Diabetes Research Foundation, and they will take your donations too. The are a variety of way that you can help. Check these websites out.
I ask again, please help us, so my son doesn’t have to go through this every day for the rest of his life. If this sounds like begging. Ok, I am begging. I am not too proud to ask for help.