It was four in the morning. I had over slept. I had wanted to check my son by three. I had increased his basal rate to deal with reoccurring highs but he had also been doing yard work that evening and I was not sure how things were going to go in the diabetes world.
I stumbled into his room, made my way through the landmine of dirty socks, old t-shirts and the fan he has sitting on the floor. I found the meter, strips and even a lancing devise this time. He lost one the previous night. It has yet to be found but I am sure will surface one day when I least expect it!
I tested and found that he was high. I cursed. I felt like there was no winning. I then looked at the meter a little closer. In the top left hand part of the screen was a little text box. It was like the meter wanted to tell me something. We are using a Verio IQ at the moment so I know that the meter did want to tell me something.
It had noticed the pattern of highs that he has been having overnight. At four in the morning, when you are tired and frustrated because diabetes has once again messed you (and your child) up completely…(I mean he should have been low not high after an upped basal AND physical activity), the last thing you want to see is a know-it-all blood glucose meter telling you the obvious–Diabetes kicked your butt once again!
Looking at that small little icon, I could hear the meter say “He is high. He has been high at night for some time. You really should up his basal rate. This can cause problems later. What is wrong with you? Why haven’t you done this already? Are you thick? I am giving you the icon. Get with it won’t you!”
I cursed a little more and left the room. Maybe I will get it right tonight…maybe but probably not.
Over the past few months I have heard a lot of anxiety and stress when it comes to testing your child with diabetes’ blood glucose at night. Its a topic that can divide the diabetes community and raise blood pressure faster than the mention of Halle Berry or pumping versus multiple daily injections. It can create strife among friends and cause a serious strain on marital relationships.
I am a night tester. I have been for the past twelve plus years. I will continue to do it for as long as my son lives under my roof. When he leaves my home, ideally he will have a CGM (that he will use) that will take the place of his current CGM aka Mom.
My son sleeps soundly at night. He has looked the most peaceful when his bg levels have been out of whack. That terrifies me. In recent months, he has woken up to the occasional low–much to his dismay and his mother’s delight. I do not yet trust that this will happen all of the time and as one adult pointed out in The Diabetes Dad’s post on this topic, there is no telling how low he was or for how long before he woke up.
Dead in bed is a very real fear. Its something that too many people in our diabetes community have seen first hand. I was recently told that there are only four cases of dead in bed in the WORLD each year. The point was made to help quell over zealous fears but I think some fear is a good thing. It gives you respect–respect for a disease that is ruthless and deceptive.
Diabetes does not show itself in anything but bad attitudes, fatigue and occasionally nausea or thirst. You see it when a glucometer is pulled out, when a syringe is injected or pump peaks out from a belt around someones waist. It does not however tell you before you go to bed, “Please know that while you are sleeping peacefully well, and despite that basal adjustment you made for the yesterday’s activity last night, tonight your child’s insulin needs will still be low. Since you didn’t realize that and did not give him an extra snack or reduced basal rate, I will make sure that his blood glucose drops really low tonight. You won’t notice. He will be peaceful and you will sleep pretty sound after all of these nights of broken rest. Don’t worry, I will take care of things. I will deplete his liver of glycogen and this time? Well this time I will cause a seizure in his body, shaking his bed and waking the house. You will get to him in time, take him to the hospital but none of you will take me for granted again….until the next time.”
That is not the only reason that I test at night. I test out of respect and a desire for knowledge. Knowledge is power and if I do not test my son during the night, I have no idea about the highs and lows he may have experienced. He may go to bed and wake up in range but during those 10+ hours, he may also have been low, high and a few readings in between. I am only human. I will not catch them all but I will catch a few. I will get an idea and it will allow me to keep him healthy.
Night testing is a family choice. In my family, I choose to do it. I am not obsessed by it. I naturally wake multiple times during the night (and did this before diabetes moved in). When I wake, I am okay with stumbling into my son’s room and testing him. Its selfish–I feel better doing it. Again, the choice is yours. Do what works for your family but make sure your choice is an informed one.
“Your correction didn’t work.”
“What do you mean? Did you fix it?”
My son looked at me a little strange. “There must have been a kink in the tubing or something. The correction didn’t work. I fixed it when I got up.”
It was now my turn to be perplexed. “Why didn’t you just fix it last night when I corrected you?” For some reason I feared an occlusion alarm last night but really didn’t worry because my son was awake and would be able to deal with it.
“Why would I fix it?” he asked. “I was asleep.”
I told him that he was not asleep. He jumped up in his bed when I took his finger to test and then sat there staring at me. When I did test him I asked him if he felt high. He said no so I retested to make sure that the meter was accurate. I also asked him if he had been high before he went to bed but he didn’t think he had remembered to do that last test.
My son continued to look at me like I was insane. “I did not wake up last night. I don’t remember you coming in to test me. I never talked to you after you went to bed until now.”
The look on my son’s face when he jumped up in his bed did make me wonder if he was low or a little bit out of it. My boys do talk in their sleep and have been known to climb walls while chasing someone in their dreams so the fact that my youngest failed to remember any of our conversation last night is not overly concerning. The fact that he was high after being lower the night before is more likely attributed to the incredible amount of restaurant pizza than it is to a rebound. All in all, its just another night in our slightly odd life with diabetes!
In honor of Wordless Wednesday, meet Phil the SUPER COOL Animas Penguin. He was way too cute not to bring home from this summer’s FFL Canada Conference!
(And his belly is made to practice inserting infusion sets)
With a new school year and a new teacher comes the ever popular “back to school” essay. My youngest son never ceases to frustrate me when it comes to such things. Two classes and four days later, his essay on introducing himself consisted of four sentences–his name, his age and where he had lived in his life. Getting more out of him was going to be torture…and it was! Thankfully, after hearing that he could write pages on the importance of the advent of a toaster to heat his Eggo’s each day, it appears that the frustration was saved for essays done at home where Mom could see them and go insane.
His essay was due today, so at 9:30pm last night he came down to my office. I was working on my own “homework” (an online course that I will be telling you about in greater detail in the coming months) but he was stuck. He had to introduce himself to his English teacher.
“Mom, pretend that you don’t know me and tell me all about me.”
“How can I tell you about you when I don’t know you?”
I began with his love of animals, the fact that he enjoys being outdoors and on quad, his gaming addiction and ended with the fact that he cheated death at age 2 and now lives with Type 1 diabetes.
He proceeded to write about his pets in detail. The two dogs, the cat and the fish that respond to any name as long as there is food involved. He went on to describe the quads that he has at his father’s house as well as the one he owns here. He wrote about his trip in the woods that very day and what he enjoyed about it. He told her about his favorite Xbox game and the origin of his gamertag.
I asked him about writing about diabetes. He told me that he had too much space to fill up and diabetes would only take up a few lines. He wanted to fill out the other paragraphs first. He expanded on his life. He was not just 15 but he was the youngest of two boys. His older brother was now living with him while going to school. He had family living around the globe.
Again, I suggested the diabetes part. He added more to his Xbox addiction sighting exactly what he liked about his favorite game. He mentioned that he has traveled a lot over years.
After a torturous hour, he was done. He had one page about himself! He had paragraphs. He had information and he was able to press save. As I watched him leave, I noted that nowhere in his essay was diabetes mentioned. In his world, it was not important. It did not warrant discussion in his essay. It was a non-issue for him. If only it was really that simple.
I heard the crash. I heard the intake of breath. Something was wrong.
I called out to the kitchen, asking my son if he was still alive. He was. He had decided to cut his hand instead of a bun.
I went into check on the level of damage.
“Who knew that we had sharp knives!?” he exclaimed.
The blood was flowing and I reminded him not to get it on the food. It would spoil the aesthetics if nothing else. At that point blood splattered on the top of the loaf. I quickly told him “Don’t clean up your finger yet. Keep it bleeding! I will be right back. When was the last time you tested yourself?”
He told me it had been a bit. I rushed into my youngest son’s room and grabbed a meter. I brought it into the kitchen and applied the test strip to the decent sized pool of blood sitting on top of his finger.
He was 5.6(100). Life was good. Diabetes had not moved into his world. I did a small happy dance and suggested that he might want to clean up the blood that was dripping off of his hand. We went to the washroom, added the Scooby Doo Band aid and were good to go.
To the casual observer, I am sure that experience would have seemed bizarre. For us, it was the norm. We do not waste blood. My oldest son knows this and knows that cleaning a cut only happens AFTER the blood has been tested.
Okay it is a little warped but its what happens when diabetes has lived in your house for over 12 years!
Yesterday my older son came home from school to have lunch. The college he is attending is only a few minutes away so he decided that a heated lunch here would be preferable.
It was strange to be standing side by side again as we cooked our meal of grilled cheese sandwiches. We have lived apart for the past two years so I cherish every moment when he is around.
We soon sat down and began to eat. As he was eating I found myself counting his carbs. I wanted to tell him to bolus 77 when I stopped myself. This is my non-D child. He doesn’t have to bolus. He just eats.
I watched him finish his meal and text his friends. He was unaware of the fact that I had been watching him. I was enjoying his presence but I was also saying a quiet thank you that so far, he still remained without diabetes and therefore carefree in his eating and other parts of his life.
My son has been back to school for a week now. Unlike previous years, I did not send any information to school. I did not contact the principal. I sent my son’s supplies to school with him and planned to send out a detailed email to all of his teachers within the coming days.
I am not a slacker who no longer cares about her son because he is now technically in high school. Its simply the fact that the majority of his teachers have had him at one point over the past two years and have been sent my information before. There are also now two children with diabetes in his school. This means that they bring in a nurse at the beginning of the year and “educate” the school. I know that this is contrary to everything I tell people. I preach that you should be in on these meetings and I still feel that way but again, these teachers have been educated by me for a number of years so I don’t feel like being overly pushy on this issue.
I also now have two other fall backs in case of emergency this year. A teacher that my son had at his former school (who taught my son for three years and was AMAZING with his diabetes care) is now teaching a lower grade in my son’s new school. My son also has a teacher (that he has had in the past) who’s husband has Type 1 diabetes, is more than willing to be there in any emergency and will handle things like glucagon if need be. I love these people!! They allow me that warm fuzzy feeling of knowing that my son is safe at school.
It was therefore somewhat surprising when my son handed me a folder that I had created two years ago and said “My teacher says that this needs to be updated by my doctor.” I looked at him like he was nuts.
“Yeah, that’s what he said and can you fix that picture of me? I look like a complete dork!”
I shook my head and took the folder. I was glad that previous homeroom teachers had seen fit to pass the “red folder” on to the next year’s homeroom teacher. The picture was a little dated but based on the fact that the folder contained information on my son with notes to contact me, my name and my cell phone number along with basic facts about diabetes care, diabetes, highs and lows, and insulin pump use, I am thinking that the teacher did not take the time to actually “read” what he was given.
Either way, I will update the information…and the picture. I will get myself in gear and make sure I contact all of his teachers once again to let them know our basic diabetes care rules–testing in class, access to the washroom and water, as well as testing to know that he is in range and firing on all cylinders before exams.
Its good to know that they are still taking diabetes seriously because sadly it does not “improve” with age the issues simply change a little.
|I am guessing that this won’t be his first choice for replacement photo either 🙂
“You need to do a site change.”
My son replied, “I can’t do it by myself. Its in my arm. I can only do leg sites.”
I asked him when this happened. He used to do almost all of site changes except the one arm that he couldn’t reach. “What are you going to do when you leave home?”
“You are going to have to come over to where I am living and do it for me. Not to worry though, I will stretch my site changes out to every four days to give you a bit of a break.” He paused for a second thinking,”It will be a bit tougher though if I have to move away for work. You will have to fly out to where ever I am. I can’t afford to pay your travel though because I will need my entire pay cheque. I am sure you can work it out.”
By now I am standing with my mouth hanging open truly amazed by his logic and my older son is rolling on the floor laughing at him. My older son asked “How long do you expect her to travel?”
“Only until I get married. Once I have a wife it will be her job to do my site changes.”
I pray he gets a wife that will see his logic!
A little over a month ago I came across an essay contest sponsored by a wonderful organization, The Diabetes Hope Foundation. They are an amazing group based in Ontario started by a mother of three young men–two of whom has type 1 diabetes. Her children have grown to be amazing men and her courage and dedication has never ceased to amaze me.
I looked over the contest for a bit and asked my mom what she thought. Had diabetes really made “me” stronger? I knew that if she could have reached through the phone she would have given me a large slap upside of the head so I figured it wouldn’t hurt to enter the contest. At stake was an IPod Touch and an IBGStar meter (I thought it was an iPad and was quite excited but I would not turn down an IPod either–actually my son won`t turn down the
IPod!). I sat down and attempted to write my story in a brief, 500 word essay. That was the biggest challenge of all! Finally, I pressed submit and asked my friends to vote on what I had written. I was 100 votes behind to start but my story was listed. I had a month to wait and see what would happen.
Yesterday at the DHF’s annual diabetes walk, the winner was announced. I am proud to share the winning essay with you…mine!
Diabetes barged into my life on a stormy day in March of 2000. Life was simple and each day was taken for granted until I heard the words…”If he lives past the next twelve hours we will teach you how to handle a child with diabetes.“ From that moment forward, I learned a lot about myself and my personal strength. I was terrified of taking my son home from the hospital. Could I handle making a toddler eat at specific times? Could I make him bleed numerous times per day? Could I stab him with a needle at least four times each day without him understanding why? Yes. I had no choice. I would force him to eat. I would mark his tiny body. The alternative had been shown to me in the ICU and it was not an option. I cried in frustration, alone in the dark. People told me I was stronger than I knew. I could do this. They were right. I did it and continue to do it. Diabetes is a constant struggle. No two days are the same. I constantly learn something new. I realized that not everyone was as strong as me. Not everyone to handle the challenges presented by diabetes and the rest of the world. I worked to change that. I gave comfort and educated people as often as I could. I changed laws. I shared information and offered support. Diabetes had stormed into my life but it gave me the strength to create real change. It made me realize that one person really can make a difference. It made me push my fears aside and turn emotion into powerful energy that propels me forward to keep fighting and to keep working to change the world for all people living with diabetes.
Thank you again to all of the amazing friends and family who supported me!! You are my rock and my strength.