The Mocking Meter

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. 

Why I do it

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. 

All in a night's work

"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! 

I often feel like the mother in Robert Munch's "Love you forever"

Phil, the SUPER COOL Animas Penguin

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) 

Diabetes won't fill that space

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?"  

"Mom!"

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. 

Keep Bleeding!

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! 

When a Sandwich is just a Sandwich

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. 

I am not slack, I am warm and fuzzy

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.  

"Your doctor?" 

"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 :)

It will be my wife's job

"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! 

What didn't kill him made me stronger

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. 

The importance of time changes

As you know if you read my blog regularly,  we were recently on the west coast for a bit.  That means changing our bodies and our clocks back 4.5 hours.  Its a bit of a challenge for the first few days but my son's teenage body can sleep until noon in any time zone!

The challenge for Mom was how to deal with his pump.  I have spoken to people before who do not bother to change their time on their pumps if they are not going to be away for very long. We were gone for about 10 days so I felt that a change was needed. I gave his body two days to adjust and then reset the time on  his pump. All seemed to work fine. 

When we came home I reminded my son to set his pump back to local time. He did as he was told and I thought nothing more of it...until we had a site issue.  

My son was high and he needed a site change.  As he dug out his supplies, I looked through his pump history. He hadn't bolused since 6am!!??? What the?? Before I yelled, I realized that we ate supper at 6pm.  His pump was 12 hours off! That was a huge problem.  His highest basals were being delivered in the middle of the day rather than at night.  His insulin to carb ratios were completely off. There was no way he could possibly be in range with all of this out of whack!

I made the quick change and waited for everything to return to a more reasonable normal.  Its amazing how one little thing like am versus pm can make such a huge difference in your life! 

Time changes? Who invented them and why must they be so painful on all levels...especially when Diabetes lives with you.  

This is our "Where's Waldo shot?"  Can you find the teen with diabetes in the trees? 

  

Isn't diabetes enough?

We see the eye doctor on a regular basis. Well we did until we moved. We had a fabulous, exceptionally thorough optometrist previously. Each year my son and I went to see her. I went because I am blind as a bat and too chicken to see about laser treatment and my son went in order to keep on top of possible diabetes complications. 

I knew eventually we would need to find a new eye person and we did.  My son's diabetes clinic set us up with a pediatric opthamologist.  Today was the appointment.  I expected it to be short. The sign said to expect 1-2 hour appointment length or more if you were a new patient.  Holy crap! We were going to have to camp out and I didn't have a book to read! 

Our appointment was at 8:30am.  The doctor was late.  We finally got into the office and the exam began. My son did poorly. He had trouble with the largest of print.  Things were not looking good. Part way through he pulled out his glucometer.  Crap (again!).  Highs (or lows) would impair his vision.  He had been high the day before after breakfast.  How the heck were we going to know if he needed glasses or not? He was high.  How do you schedule an appointment for when your bg levels are perfect?? Diabetes ruins everything.

I had not really thought about diabetes messing with an eye exam before.  My kids did not inherit my poor eyesight and I never think of something else being wrong. In my mind, the opthamologist was about diabetes not eye sight. There had been close calls before--"we will watch this but he will probably need glasses later."  but they had never amounted to anything.  Was today going to be different? 

My son had his eyes dilated, she re-examined him and decided that he would see for another day.  His eyes are not 20/20. They are a little bit worse but not enough to worry about.  She left it up to us to discuss and decide what to do.  I asked if getting glasses now would prevent further deterioration of his eyes.  She said no. 

As we got into the car at the end of the appointment, I asked my son what he thought. He said that there was NO way he was having glasses, contacts or anything else.  He could see. He could see the writing at school. They had said before that he may need glasses but his eyes were better at the next appointment. Today was no different. He would not need glasses. He had diabetes. One thing in life was plenty. 

Well, I asked didn't I?  I agreed that we would wait and see how things went. If he felt he couldn't see, he was having problems at school or next year she said things were worse--glasses it would be. He was right though--shouldn't one health issue be enough for any person?      

My Goal for the school year.

Its that time of year again.  New clothes have been purchased because he has outgrown "every pair of jeans" he owns...or so he claims.  Fancy scientific calculators have been bought to allow him to handle high school math and a pile of note books sit on the floor in his room waiting to be taken to school in the next day or two. 

School begins tomorrow in full force.  The bus arrives at 8am and he will be gone until close to 4pm.  We are lucky.  There is no change of schools.  There will be minimal change in teachers.  My son goes to a small but growing school.  His class size will be tiny.  His teachers have had two years to begin to understand his diabetes needs. I am not in a panic. 

My son will be 15 tomorrow. He carries his meter, glucose and spare supplies in his back pack.  There will be new expectations for grade 10 however.  I am hoping that this will be the year that he hits the ground running rather than sits on the sidelines for the first semester until his mother loses it, gets involved with the teachers and he pulls up his socks for the rest of the year. 

This will also be the year that I expect that little bit more when it comes to diabetes care.  I will be sending all of his teachers a reminder letter regarding my son's needs and specific care.  I will also be demanding that my son actually write all bg readings ON his exams before he does any.  I would recommend this to students of any age. 

As parents, we want our children to do their very best.  As parents of children with diabetes, we have seen first hand how cognitively impaired they can be by a high or low blood glucose reading.  If I know my son studied for an exam and failed BUT had a low bg level before taking the exam, I know that the exam did not measure his true knowledge.  I can then work with the teacher to see what we can do to get a more accurate result. 

My son is not keen on testing in class.  He does not like drawing attention to himself. I have been asking him to write his readings on tests since he was in elementary school. It has been hit and miss at best.  This year, its the one thing that I really want him to get into the habit of doing. Its my care goal for the year.  Not a huge one but a big one for him--and an important one for his academic career! 

Happy first day of school everyone!!