I have said it time and time again, CWD conferences truly are the very best events out there for people living with diabetes. Vendors who fail to take part are missing a lot. Families who do not take part are missing a lot. People with diabetes who do not attend are also truly missing out.
Yesterday the Internet was abuzz with the story of a death of a seven year old boy. It was said that his parents missed testing him that night and when they checked on him the next morning, he had succumbed to “dead in bed”. I am positive that the story is not that simple. The outcome however is no less heart breaking. Another life claimed far too soon by a disease that we all hate.
There are many statistics out there. Some say that there will only be 50 deaths each year worldwide because of dead in bed and they will most often occur because of excessive exercise or alcohol consumption. Others say that one in 20 people living with diabetes will die because of dead in bed. No matter what the numbers are we need a cure. No matter what, we cannot ease the pain of the families. My heart goes out to them. I cannot begin to fathom their pain.
In October of 2010 I asked the question, “Is Diabetes more deadly than ever or do we just hear more about it now?” Once again, here is that post….
Yesterday I heard of another child who died because of Type 1 diabetes. She was thirteen years old–the age of my own son. She had Type 1 diabetes–like my son. She had parents who loved her and who were diligent in her diabetes care but she died anyway. That is every parent’s greatest fear. She had hopes and dreams. She wanted to die an old woman with a book on her chest…sadly she died before she became old or had any experience as a woman. It is truly heartbreaking.
This is not the first death from diabetes that we have heard of in just this past year. This is not the first time that I have heard of someone so young being taken by this disease. This death led me down a path of contemplation. Why were so many people dying? Was this something new? Did we lose children to this disease before? Had we traded rapid insulin and better technology for a higher chance of death?
Those of us who live with the unwanted house guest called “Diabetes”, know that with tight control which promises prolonged health is the risk of severe hypoglycemia and death. Its a risk most of us take with some caution. We try to keep the A1c down. We work to maintain “normal” blood glucose readings at the risk of becoming hypoglycemic unaware. Its a scary balance. Night is our enemy as we fear, as these parents did, of waking up to our children “Dead in Bed”.
I put the question out to many parents yesterday–was diabetes more deadly now because of the advances we have or do we hear about death more because of social networking and our reliance on the Internet?
The answers were mixed. Many had a new fear of this age of puberty (the last number of deaths were young teens). Were teens more susceptible because of insulin needs that changed on a daily basis with incredible swings? Did adolescence and its rebellion breed a greater risk of deadly behaviors in children with diabetes?
Others felt that technology was a good thing. We were not seeing as many complications as we once did but they noted that try as we might, we are just not pancreases. We could not do enough to mimic Mother Nature. We were not God and could not anticipate all of the body’s needs. Despite our best efforts, some form of complications or worse were likely to happen at one point. That was terrifying.
We have children and we realize a need to protect them. Many are devastated by the diabetes diagnosis because they feel that they have failed to protect their child/children. After diagnosis, the need to protect becomes even stronger because we failed the first time around. Now it becomes our job to keep their bodies healthy and strong. We fight to make sure that they have a normal life–as normal as it is to live with syringes, pumps, glucometers, and glucose tablets with you 24/7. To read of a death just shows us that our best just may not be enough.
Yes, I realize that my choice of pronouns has changed from someone else to me. I have always felt it was my job to protect my children and yet my son almost died because of diabetes and misdiagnosis. It is now my job to turn him over a healthy body when he leaves my care. Its a difficult job especially since he is at an age when he is looking for his own independence. I, like many before me, face the challenge of trying to teach him to care for himself and to be there to pick him up and dust him off when he makes mistakes. Death however makes us want to hold them close forever and never sleep again. We want to be in their lives 24/7 and keep them safe.
So to get back to my original question–has diabetes become more deadly? Probably not but it is still no less scary and no less deadly. Diabetes DOES kill despite those who think otherwise. The fear is real and, while possibly magnified by the Internet, the danger is still present. The answer? We need a cure. Its sadly that simple. Until there is a cure, we will continue to hover and pray. We will lean on each other in a way not available to generations before. We will learn from each other and move forward but we will never forget those that we have lost….
I was again honored to be a part of the Children with Diabetes Friends for Life Vancouver Conference this past weekend. As a member of the faculty, I enjoy interacting with the many families who attend the conference, chat with some of the vendors and learn from the other staff and faculty whom attend. It is an amazing experience.
Over the past few years I have been a little discouraged at the lack of support from Canadian vendors. Each year that I attend, I hope to gain some insight into which insulin pump I should chose for my son. His warranty will soon be up and what better place to learn about pumps then at a diabetes conference?
Last year, when the conference was in Toronto, one of the major pump companies was obviously missing. I was quite disappointed because I had decided that I wanted to seriously look at their CGM integration. A few other companies also seemed to be missing but the event was still a great success.
This year, when looking at technology, the pickings were even slimmer. There were only two pump companies to chose from. There was only one glucometer company to check out. There were no insulin companies showing us the new directions that insulin and other hormones are headed in. There were no sweetener booths showing us the awesome ways that better tasting alternatives to sugar could be used.
There were some great companies present. Children could decorate OmniPods. Everyone loved dressing up and having their picture taken at the One Touch booth. There were new gaming apps on display by an innovative company called ayogo as well as booths from Store a Tooth, MyCareConnect, Dex4, CDA, JDRF and more.
At the beginning of the event, I was really disappointed by the poor Canadian corporate support to families living with diabetes. Why were we not important? Did they feel that they were already reaching us through social media and did not need to be “seen” at such an event?
As the event came to a close, my perspective changed dramatically. I am sure that Jeff Hitchcock, Laura Billetdeaux and the other CWD staff experience this all of the time, but it was a bit novel for me. I had vendors coming up to me as we were leaving thanking me (I spend a lot of time directing people from the registration booth so they have seen me a few times)! They were grateful to have been a part of such a special weekend. They were honored (as I always am) to be involved in something that touches so many.
I am not sure why the “other guys” don’t think that they need to attend CWD Canada events. I know that they are truly missing out! These events do more than bring families together and connect kids with new friends who also have diabetes–they create friends for life. They create memories. They inspire. They touch our hearts like nothing else can.
My brother and sister have been addicted to Slurpees for longer than either would like to admit. It wasn’t overly surprising then, when my sister pulled into a 7-11 store on our way to her house and proclaimed that she needed a Slurpee.
I am not the fan that my siblings are. I haven’t had one in years. I knew however that my youngest son would probably love the try to cool treat. I also had heard from people who lived near 7-11 stores, that they now had low carb Slurpees. We were set!
I found the calorie reduced Crush Slurpee and filled a large glass. I then began to look around. “I don’t suppose that they have a carb count listed anywhere around here do they?” I asked. I searched for cup sizes and any other details I could find. There were none.
My sister was certain that we could find something on the Internet and promised to help me dig around when we got home.
I hopped into her truck, grabbed my phone and began a search. I found the Slurpee in question but the carb count was for 355mL beverage. How big was the cup I had? I continued to search while we drove back to my sister’s house.
When we arrived my son tested and began his frozen treat. He was not as enamoured as my siblings but he was not giving it up either. I was still working on the carb count. I finally found the serving size for a “large” cup. My sister piped up to cross multiply and divide to get the carbs in my son’s Slurpee!
Sadly, I was too familiar with this process and got out the calculator. Soon we had a carb count of approximately 76g CHO and my son was good to go.
The entire process took at least a half an hour. It struck me that in “normal” circumstances a parent goes to the store, brings home a treat, the child eats the treat. The end. For those that think that diabetes is no big deal, they ought to try buying something as simple as a low calorie Slurpee for their loved one and see what sort of a deal it really is.
I know that you have basically given me the summer off and I appreciate it. You were on vacation for four of the last six weeks and I have very little input into what you were doing to my son.
You returned a few days ago behaving like a spoiled two year old child in full tantrum. I would kindly appreciate it if you would stop! I have not seen a bg level below 10 (180) or even close to 12 (215) since my son came home. I have injected my son for the past two nights to get some sort of control going on and you have bucked that by still not letting him come down into range.
You have made his body used to being high. We have tried numerous site changes to battle you. I am getting tired.
You have me up at 3am each night fixing all of the damage you have done throughout the day. You are creating more and more highs. You are causing me a great deal of stress. I can no longer go back to bed and sleep at 3 but instead toss and turn for two more hours wondering if I will win this round.
I am tired, Diabetes. I would really appreciate it if you can finish with this childish behavior and behave for at least a short period of time. We are heading off on a plane today and then will be a way from home for a few days. Granted if there are any major problems we will be in the best possible place next week but guess what? I really don’t even want to see minor problems. I am done. Finished. Consider yourself on a time out!
A very tired Mom.
The new pump is on. The old basal rates have been retrieved. All rates are now posted on a sticky note beside my computer on top of the “MOTHER” heart my oldest son made for me back when he was probably in Grade 5 or so.
My youngest son arrived home yesterday. Together we sat down and uploaded the new pump and decided to try something different–we put food into the menu section of the pump. Its a “thing” that allows you to have the carbs for favorite foods right there. We added the important things like Big Macs and Tim Horton’s Smoothies. He was then good to go.
I really wanted to look over his meter and see what he had (or hadn’t) been doing while he was away. I decided to let him settle back into his own routine first. I thought about not looking at the meter at all. What was it going to tell me?
It would probably tell me that he ran way higher than I would like. It would probably tell me that he wasn’t testing when he was supposed to. It would probably just elevate my blood pressure and frustrate me. There was nothing that I could do about the past. I was best to just focus on today and go forward.
That was in an ideal world but by now you should know that I am far from ideal. I had to look. I had to know.
Just before bed, I asked him to see his meter. Despite the fact that I was sure that he was out of One Touch test strips, he swore that he had used an old green One Touch meter while he was away and left it behind (convenient!). To make life simple for me however, he had found an old log book and written down all of his readings! What a great child with diabetes.
The logbook showed readings from every day. There was one low. There were some highs with notes as to what had happened. There were a few readings in range.
My son waited for my reaction. I said that I liked that he had written everything down but sadly he had logged before and created every single reading. I was not so sure that I could trust this book either. Part of me felt terrible for saying that. Part of me knew that there was a very good chance that I was right to doubt him. Part of me hoped I was wrong. I wanted to think that he did test when he wrote down that he did. I want to believe that the readings were all correct. The diabetes police inside of me said that while some readings were right, he most likely did not have enough test strips for two weeks of using that meter. His readings were far from perfect but not as bad as I would think that they should have been for all of the sites he swore he lost (four site changes in one day) as well as a pump that was failing.
He just shrugged. I don’t know if that was saying “well I tried to get it by you.” or “I logged, you don’t believe me. Whatever.” I hope its the first. Either way, today is a new day. Last night was a night of highs. Welcome home diabetes!
Yes, I admit it. I am a “Think About it Staller”. I have blamed my son for many of the diabetes messes we have landed in but if I was a much more conscientious Mom and a bit less of a “think about it staller” we may not be in the current predicament.
Last night, we went for an evening walk. My phone was running on fumes so I plugged it in to charge and left it behind for a change. Imagine my surprise when I walked back into the house and saw two missed calls from my youngest son. There had to be trouble. He had left a message but I simply called him instead.
“My pump won’t let me bolus. When I need to bolus it screams at me instead.”
A lot of not so nice words went through my head as I realized that my son was at his father’s, not coming home for another week, and had no spare pump with him. I asked him if he had tried to take out the batteries, restart it and bolus. He had tried everything. Super crap! I asked him for the serial number off of his pump and the support line telephone number. I told him I would get on the phone and we would go from there. In the meantime, he had told me before he left that he had syringes at his father’s house so he could inject.
I called the Cozmo support line and was shocked to no longer even hear, “Press 3 to deal with warranty issues”. There was just dial the extension or press 2 for clinical support. Eek!! The client list must be getting smaller. I finally spoke to the on-call answering service. I knew she was not a pump person. It took five spellings for her to type out “bolus”. It was frustrating but not her fault. I waited to get my call back from the clinical staff (last time I called there was only two of them left).
A woman called me within a few minutes. She quickly said that she would replace the pump. They only have one color–slate grey. They can only ship during office hours. The pump most likely would not go out until late tomorrow afternoon due to many downsizing issues. What can you do when they don’t make your pump anymore?
In the meantime, my son had called two more times. He had finally got his pump to bolus…oh and correct that high that had happened because he was eating cinnamon buns. Yes, I screamed. Yes, I reminded him to inject! Yes, I suggested that foods that were not high in fat and a carb counting nightmare would be the best to use until he had a fully functional pump. I then began the search for his old Cozmo 1700.
This was the pump that usually travels with him. This was the pump that I had thought about sending along (and normally do) “just in case”. This was the pump that was instead hidden somewhere in the depths of his room. When I finally found the lifesaving pump, I set about the task of reprogramming.
And here would be where further proof of me being a “think about it staller” came in. What were his basal rates? What were his carb to insulin rates? Heck, what was his insulin sensitivity these days? I had no idea! I searched for the log sheets from his last endo appointment. I tried to boot up my old computer that had his Cozmo program running. Neither would have the latest results but after numerous calls and texts, my son was no longer answering his phone or his messages. I had no way of getting the actual, recent rates. Before he left to go away I had thought, “I should write down all of his rates just in case. I should actually keep a book that has the latest changes in it at all times.” Of course, that is where it ended…as a thought.
The old pump is in the mail. Because of where my son is staying, the only courier service that has a slight chance of getting to him within 24 hours is through Canada Post. I am crossing my fingers that he gets it tomorrow, if not it will take until Monday. I am kicking myself for not sending it to someone at an address with higher odds of it arriving on Friday but you only think of these things once it is too late.
Lesson learned. This “think about it staller” will never let her son go anywhere without the spare pump. Said pump will have the latest rates programmed in before leaving the house. An updated list of basal, bolus and correction rates will be kept near to me…Hopefully!
|The old standby and one of the old Lean Green Pumping Machines|
We have spent a lot of our time this summer traveling. It has been an amazing summer with lots of lovely warm days. Its not surprising then to see so many people–young and old in shorts and lights shirts.
Sitting in Tim Horton’s recently, I saw a little girl happily playing with her grandfather. She carried a small lunch bag. She was wearing shorts and a tank top. Her bare arms and legs visible and full of energy. The bare limbs and lunch bag sent my mind reeling back in time.
I remembered when my youngest son was her age–around five perhaps. I remembered his small legs. The tops of which were often marked by small little bruises. I remembered the tank tops he would wear and the dots that could be seen on these little limbs as well.
At the time I thought of them as the price paid to keep my son alive. It was an invitation for people to talk and learn about diabetes. Now, as I watched this young girl, I wondered what people really thought. Did they ask themselves if I was abusing him? Did they mistake life saving injections for some sort of injuries? If I didn’t know the difference I might have asked myself if that child was accident prone or was there something more going on.
I looked at the little girl again. She was full of life–full of innocence. Her body unmarked and perfect. I saw my son the same way. Like his older brother, he was perfect and full of life. He had lost some of his innocence by that age however. He had already spent years having his body violated by needles. He had already cheated death and we would make every second of life count.
Once again, let me just say…I hate diabetes. It gets on my nerves. It messes with my mind and every time I dare to think I have things figured out? WHAM! It screws with me.
A few nights ago we were traveling to take my son to visit with his father for a few weeks. We made a few stops along the way and decided to enjoy a nice big pizza in our hotel room. That night readings provided some great insights. My son was perfect after two hours. His readings climbed at the four hour point. Eight hours after eating the fat was wreaking havoc and my son was nice and high. Ugh!
I decided to take this as a learning moment. I took careful note of how things rose and vowed to make some great, informed changes later. I was going to turn my frown upside down!
The next day we headed back on the road for the final leg of the trip for my son. We stopped for some lunch. Once again, our travel meal was higher in fat than I would normally like. Once again, I was sure that we were going to defeat diabetes by getting the insulin ratios and delivery times perfect. Once again I was wrong!
As we traveled down the highway, I heard my son ask “How much of this glucose gel should I take?”
Crap! “How low are you?”
He was 3.0 (54). I told him to drink the entire thing. I looked back and noticed how pale he was. I began scouring my purse for more glucose. I always have enough food to feed a family of four for a week but I had cleaned things out when I went away last month. I hadn’t replenished. What was I thinking?
Panic began to creep in. We were on the highway. We were not near fast acting glucose. All of our beverages were sugar-free. I watched the clock and held my breath. Finally I asked my son if he had retested. He did. He was fine. Phew!! Catastrophe averted!
Later, I found more glucose hidden in the truck for such emergencies but I am so glad that we didn’t really have to worry about it and I still hate diabetes!