Category Archives: Night Time with Diabetes

The DexCom has Come To Town

It’s in the house. He is willing to try. Momma is quietly dancing inside hoping for the very best.

What is it? It’s a DexCom, given to us to try by our fabulous Animas rep.  She dropped it off to me with instructions last week. It sits reverently on top of my son’s dresser waiting for him to come home to try it out. I am nervous and excited.

For years I have wanted my son to use a CGM.  I could see how it would make nights so much easier. I could see where it would help him during the day. The thought of seeing a 5mmol and actually knowing if this was a good reading or one that would drop dangerously low has been just too much for this momma bear to hope for.

My son on the other hand has never had any interest in a CGM. He doesn’t care what Mom says.  He has not been bothered by T1 people telling him how much he would love it. To him it has been an extra thing to wear and carry. It was a burden not worth his time.

What has changed? I am not sure. He is a bit older. He is looking at his future in the workforce. He has been dealing with his own care and his own doctor appointments for the past year.  Perhaps the combination has brought him to a point where he is at least willing to give something new a try. I don’t know but I am so happy…and so scared.

What if he does like it? What if he wants to move forward with purchasing one? How will I afford it? How will he? Will he end up working for a company that will cover a CGM and his pump supplies? If he doesn’t, will he make enough money to be able to cover this cost on his own? Will we be able to convince the provincial government of both the long and short-term value of sensor augmented insulin pumps?

dexcom
Its here!

There are so many questions and so few answers.  For now I will focus on one thing–in a bedroom, in our house is a device that will change how we see my son’s blood glucose readings for one week over Christmas.  That device will offer us a window into a world that we had never had more than a glimpse of in the past.  It is the key to better control and perhaps even a bit more freedom for my son. It’s not a cure but fourteen years ago, I could only hope for another tool in this fight to keep my son healthy.  Soon we get to see if it’s a fit for him.

Blue Candles…once again

In July of 2011, I sat down and posted my thoughts on the blue candles.  Those of us in the Diabetes Online Community know them all too well. They are candles lit when a person with diabetes loses their fight with this disease.  

Last week I saw them appear twice.  A young boy around 11 years old and then another child just beginning their life as a young adult dead at age 18.  Heart breaking, painful and leaving us desperate for a cure, I also thought is was a good time to revisit that post.  The circumstances of my life have a changed a bit. My children and I are both older but the feelings remain the same…

Blue Candles–they are the candles that we light in cyberspace to remember someone with diabetes who has lost the fight. Each month, each week, we seem to see these images pop up across the online community.  As profile pictures are changed on Facebook stories emerge, fears grow and the desire for a cure is that much stronger.

Most recently the candles were lit for a bright, young fourteen year old girl. She was diagnosed when she was four years old.  She laid down for a nap and her father found her dead on her bed a few hours later.  The story sends chills down my spine.  She did not die at night. She passed away sometime during the afternoon.  We do not know many of the details.  We only know that she was far too young to die.

I don’t tell my son about these stories any more. He is almost the same age and has had diabetes for a few years more than she did. I don’t light candles on my Facebook profile.  I don’t write about half of the stories that I hear.  I can’t. I read about these children–whether they are fourteen or forty, they are still someone’s children.  My heart breaks for the parents and the families. I hug my boys a little closer. I pray a little harder. I hope for the very best.

I was reading a story one day of another child lost and of course had teared up a little. Someone told me that many children sadly die each day.  It could be a complication from cancer or an asthma attack but other diseases kill as well. It was suggested that I can’t focus on these deaths and be obsessed or paranoid. I reassured this person that I wasn’t. I read. I mourn. My heart aches for the families and I grieve for the life cut short before its time.

It is true that our children die crossing the street, riding in cars and playing in swimming pools.  As parents, we do our very best to protect them.  We teach them to look both ways before crossing the street. We put them in car seats and demand that they were seat belts.  We teach them water safety and we warn them about the dangers of drugs and alcohol.  All in all we do our very best to guide them and pray that they will be okay.

As parents of children with diabetes, we do all of that “normal” stuff and then we do a little more.  We work to help them to recognize highs and lows.  We test them as often as we can.  We keep tight control to prevent complications and fear going too far and having to wake to a child gone because of a low.  These fears are real. They do not keep me up all night but they do wake me up at 2am to test.  They do not stop me from letting my son be a child but it does make me check his pockets for glucose and his cell phone when he goes out.

As a parent, I cannot protect either of my children 24/7 for the rest of their lives. I wish I could. As much as I love watching them grow, think and spread their wings, part of me craves for the days past when I held them tight and could keep them safe in my arms.  They are growing. My oldest son is driving and almost out of school.  My youngest is well into his teen aged years and venturing off on his own more and more.  Diabetes or not, I can only pray I have done my best, continue to do as much as I can and leave the rest up to a higher power.

Last night was my son’s first night home after a few weeks away. I went to bed and woke a few hours later than I had planned to but he was low. The story behind one of the recently light blue candles played itself out in the back of my head. After 45 minutes and a lot of juice, his blood glucose levels were back in range and I could return to bed. I said a prayer of thanks that I woke up to test him. I prayed for families who were not so lucky.  I touched my son’s hair and wanted to hold him tight and kiss him gently on the forehead like I used to when he was small. He is now a teen. If I did anything beyond quietly touch his hair he would wake up creeped out and would claim nightmares for the rest of the night! Instead, I watched him sleep and I thanked God that he was alive, healthy and happy.

I will test my son at all hours. I will remind him to bolus.  I will deal with late night lows.  I will demand to know where he is going when he leaves the house. I will preach the evils of smoking, drug use and the dangers of too much alcohol.  That is my job and I need to know that when I close my eyes I have done that job to the best of my ability. This will never guarantee the 100% safety of either of my boys but its my very best and that is all a parent can ever do.

Psychic Connection?

The other night was night two of tossing and turning which in itself is not entirely unusual. This night was different though.  I was completely tired and ready to drop.

I had read a few pages of my book, done some relaxation exercises but sleep would not come.  After awhile anxiety began to creep in. I tossed and turned some more.  My mind began to take off on its own. There was no way to reel it back in.

I thought of my oldest son living up in Alberta.  Had he been injured at work? I would have heard if he had. I tried to shut my mind down again. I tossed and turned some more.  I thought of my youngest son. Was he testing at night? Was he in trouble? Had something happened? I again worked to calm myself down. Both boys, or someone around them, would have contacted me if there was a problem.  I was being foolish.  I was overtired. I had too much on the go. I had too much time on my hands.  There were a million reasons for me to be tossing and turning. Driving myself insane was in no way helping the situation. By 2am I finally fell asleep.

When I got up the next morning, I wondered if this had just been a reaction to so many years of interrupted sleep.  Was my body going through some sort of withdrawal? It has not slept through the night for any extended period in 20 years.  There was bound to be some issues at some point. I decided that I would try herbal tea with my book the next night.  All would be fine. My kids were still alive. No friends or family had been injured during the night. Obviously my anxiety was unwarranted. It was probably just my body being strange….and then I talked to my youngest son.

After a bit of chatter, I asked him how his readings were.  “Good except for last night. I was up all night because of a bad site.  I got it fixed though and was perfect during the day.” BINGO! There was the source of my anxiety!  He was in trouble the night before.  Well not trouble, but you know what I mean.

I have spent almost 14 years somehow waking to most diabetes related events. I would wake at unexplained times when he was low or high.  Something would bring me out of a deep sleep and make me test him.  We have no CGM.  I just somehow often “knew“.  Perhaps this knowing did not know distance?  I am not sure. Some people would say that I was crazy and this was just a coincidence.  It could be. I am not sure but I do know that I slept a little easier the next night.  Any tossing and turning  I experienced that night didn’t have a higher level of anxiety attached.  As long as my son is also waking and dealing with things…well I will probably always worry and be concerned but hopefully I will find a level of calm. If I don’t, I will text! psychic 

Who will do the pouring?

It was 6:30am.  I woke up in shock at first that I had slept so long and then calmed myself. I had gone to bed after 1am and my son was still up doing his “thing” for a few more hours.  He tests before he goes to bed so it was probably just the right time to test. And I was right…

I checked, doing my best to stay 3/4 asleep so I could doze instantly when I returned to bed.  He was low.  No such sleeping allowed. I got a glass of juice and told him to drink.  I continued my routine of heading back to my room to wait for 15 minutes.  As I headed back however, I began to think…what will he do when I am not there to wake him and bring him juice? I know that many adults with Type 1 diabetes handle it fine.  They have glucose or juice boxes by their beds. They wake up and deal with it. Its part of their lives…but this is my kid. He is not an adult that I know.  No matter how big he gets he’s my little boy.

I hope that he will wake on his own. I know he has done it (and complained about this new-found ability) when he was away from me. It still makes me worried. My son is very private about his diabetes. He is also very independent.  That is a good thing and a terrible thing for a mom.  I know he has good friends. I know that they would watch for him if he was living with one of them…but what if he wants to live alone? Well, he should have that right! But as his mom, I worry. I know it will sort itself out. I can’t borrow worry. I can’t predict the future.  At night, nightmares rear their heads though.

Its daytime now.  Time to focus on the today…like getting him to take out the garbage and Swifter the floors! He will soon be 16 and there will be enough to worry about with him learning how to drive.  I will save the worry about how he will handle nights alone for a few more years…or another late night/early morning low worrying session!

juice

Another Night, Another Battle with the DMonster

3:15am.  I looked at the clock and began to do the math. How long was it since my son went to bed? What would his bg level have been? Do I really need to test yet or was it too soon? My bed was comfy.  It took me forever to fall asleep.  Did I need to get up or should I sleep another hour?

I figured that he had probably tested around 1am but something still made me drag my tired butt out of bed. I made sure to not be fully awake. No major movements to disturb the still sleeping parts of my body.  All would be fine. My mind would be appeased and I could go back to bed…or so I would have liked but the meter said differently.

He was 4.3 (77).  Not ideal for sleeping in my world.  I quickly woke the rest of my body and my brain began to fire on a few more cylinders.  It was time to find some glucose! I went to the fridge and for some reason it was filled with diet Pepsi, diet lemonade, and zero calorie flavored water.  Nothing with any decent amount of carbs in it! Okay no panic I had glucose somewhere. Eventually I found a bottle of liquid glucose.  I got my son up enough to drink and sat on the couch to wait.

I checked out the world of Twitter. I caught up on the latest happenings in the world of Facebook and read a few pages of my book.  Soon it was time to check him again.  Success…well sort of. He was now 4.6 (83).  It was still far from ideals but he was on his way up.  I scoured his room and found a bottle of glucose tablets. He would not be happy in the morning. He says that they leave a crappy taste in his mouth when he gets up but a glucose hangover it would be.  I fed him three tablets while he slept and returned to my own bed.

I wish I could say that I instantly fell asleep but I didn’t.  By 5:30 I was still staring at  the clock.  Thankfully its Saturday so I could sleep in a little bit but by 6 I checked one more time just to make sure all was still okay. He was a lovely 7(126) so I was happy to doze for a few more hours.

Diabetes may have kicked my sleep pattern to the curb for one night but we are ready to fight another day…and make a few changes to summer basal patterns!

fight the d monster

Join me on De-Nial

This has been a very emotional week and I have tried to insulate myself from a lot because…well I don’t know if I can handle too much more.  Recently, my family lost a dear young friend. He spent a lot of time at my house while growing up, was a good friend to my children and had only just become a new father himself. He death was both sudden and shocking.  He was only 21 and I still cannot begin to imagine the pain of his parents.

This week I have been seeing many Facebook posts about 3 or 4 children with Type 1 diabetes who died in the within the past few days.  That is way too much death for me to handle.  I honestly have not read the stories. I have heard of officials questioning the diet of an undiagnosed toddler who died–as if his sugar intake could “cause” type 1 diabetes rather than the medical community not diagnosing him? The horror is unimaginable.

As I mentioned the other day, this was also diabetes clinic week.  I still don’t have our most recent A1c back but we got a great pep talk about how its just a number and its only a concern if there is continued problems. I give that speech but it was nice to hear them saying the same thing to my son.  No matter what  reading comes back, I hope we do watch things more carefully, learn and move with forward with a stronger footing.

After the doctor’s pep talk and my mention of the possibility of a rebound at night after what I assumed was an undetected low, our nurse came in.  She reviewed the documentation and said “Oh, he had a really bad low did he?”

I was kind of puzzled. What bad low? What happened? Where was I?

“He went low at night. How terrifying for you!”

Crap! That low! I had put “that low” out of my head.  It was my big failure. It was my biggest fear almost realized. Did she have to mess with my protective bubble? As I said, this has been a rough week and I was doing a great job at insulating myself against any more stress or guilt.

Mess with my bubble she did! Instantly I had a flood of guilt as I remembered hearing someone else innocently telling me that they had woke up to hear my son moaning in his sleep and knowing that I didn’t wake up!  The panic stormed back in as I relived the fear of “what if his body hadn’t kicked out glycogen?”  Was he really going that low? Could something horrible really have happened between the 3am check when he was perfect and the 7am check when he was high?

I quickly shrugged her comment off stating that I didn’t know “for sure” that it had happened. I made adjustments the following night based on assumptions and the fact that he was insulin resistant for most of the next day.  Extreme testing, him waking and telling me he was dropping, and subsequent basal reductions would suggest that a problem may have occurred, but let’s again say that this was all very theoretical.

She simply nodded as if to say “if it looks like a duck, quacks like a duck, and walks like a duck, its probably a duck.”  Or in diabetes terms “If it looked like a rebound, you had subsequent lows at a similar time, and a reduced basal fixed it, he probably went low and you missed it!”  Thank heavens she just nodded and smiled.  That allowed me to slip back into my lounger on the River De-Nial.  Its a beautiful place.  With all of the ugliness of the week, I think I will happily float there a little while longer. The alternative is not a good place to be–terror, guilt, and more sleeplessness.

floating

Sleep Guilt

Do you ever feel guilty for sleeping? The other night, I was in bed and really wanted to roll over and go back to sleep. I am a night-time tester and have been since diagnosis. I know some people do not believe in a need to test at night and that is their choice.  For me, night testing is not a choice but a job that I must do to keep my son safe, healthy and alive each night.

I know how important this is to me.  I know that there are nights that I have woken up at unexplained times to find him low and dropping.  I know that I have checked at other times and found him high or with site problems that I was able to stop before they turned into ketone issues.

I am very conscious of how “lucky” I am to be able to test my son at night. I know that there are parents who have lost their children to diabetes that would gladly take my place for a few nights.

I should be used to interrupted sleep. I have not slept through the night since the before the birth of my first son.  He was a terrible sleeper who never slept through the night until he was six years old! Waking, walking, testing, and going back to sleep to do it all over again a few hours later should be habit and simple.

Despite all of that, I often feel guilty when I wake up and don’t want to get up.  When I have those moments of decision–when was the last time he was tested? What was his reading? What are the odds of there being a problem right now? Do I need to test yet or can I doze off for another hour?

Sometimes those questions simply make sense.  It may have been three hours since I went to bed but I know that my night owl teen has only been asleep for an hour and he normally does remember to test before he goes to bed.  He also knows to tell me if there is a problem before he goes to sleep. It may therefore be safe to sleep a little while longer. Sometimes, those questions are purely selfish. My bed is warm.  My body is in a pleasant state of relaxation and I really don’t want to disturb it. It’s at that point that I feel guilty.

Getting up is my job. It is not one that I would have chosen but its the role that I have been given and it is very important.  My son will sleep through almost anything except the worst of highs.  Some days I wish it was different but as I have said before, everyone has something to deal with.  This is our “something” and honestly, the alternative is not worth a thought. So I live with the guilt of sometimes not wanting to get up.  I push past it and do my job–the job of a parent of a children with diabetes.  fight the d monster

Baby steps forward perhaps?

Sunday morning brought a vision that shocked me to the core…my son weighing his cereal! I was tempted to take a picture but I didn’t want to scare him or prevent him from doing this again. scale

Now that may not seem to be a life altering event to many.  It is something he has been told to do on a number of occasions. I have even shown him how his eyeball has been seriously off but telling him and seeing it happen are two very, very, very different things! There was no harping. There was no “Where is the scale?”  He actually did this on his own! Did it result in perfect bg levels? I have no idea.  Honestly, days later I remain so shocked by this occurrence that I haven’t checked. I am just hopeful that he is learning.

That is, I was hopeful until 3am this morning when he bg level was dropping after a strenuous workout the night before.  At that point I was just irked that he hadn’t listened to me.  I had told him to reduce his basal after exercise. I was positive that he hadn’t.  Once again, I was up for an hour in the middle of the night after being ill the day before.  Something was going to have to give!

I decided that if he hadn’t listened to me and caused me to lose sleep because of it, I would be taking back my sleep in the morning and he could deal with making his own breakfast and lunch (yes, my kid is spoiled and Mom cooks a hot breakfast and prepares his lunch daily despite his age)!

Well it sounded really good at 4am. It still sounded great in my mind at 7am when I was prepared to dish out my consequences to his ignoring my instructions. Unfortunately when he told me that he had done what I told him.  He exercised hours before bedtime and felt that he was okay (as per Mom’s instructions). My argument was gone.  He was learning. He had made a judgement call based on advice received from Dr. Mom and she was wrong. Darn!! I headed of to the kitchen to get breakfast.

We discussed the fact that exercise can have an impact up to 24 hours later.  More work to do but dare I hope that after all of these years, some of my lessons are starting to sink in??

Opening Tablets at 2am could be an Olympic sport!

According to Facebook, I was not alone in my early morning fight with diabetes.  I noticed that many other parents spent more time awake last night than asleep thanks to the dia-beast!

Last night my son was the picture of health and fitness.  I could hear the weights clambering as he lifted and pressed. I watched him haul his body up and down on his chin up bar and tried to convince myself that I could do that if I really wanted to. As I headed off to bed, he sat at our table chopping fruit and adding it to his plain yogurt for a snack.

He had been high the night before but I was guessing that working out and low-fat foods were going to see bg levels in range.  Well, that is what I hoped but at 2am I woke up and decided to see how things were going. He was 5 (90).  I hate five.  It’s a beautiful number during the day and a nightmare in the early morning hours. I just never know which way it’s heading.

Last night, I was pretty sure that I knew.  There was still a little bit of insulin onboard and I was certain that he was going to drop. Just in case I decided to give him some glucose.  I love glucose tabs for just these occasions–a glucose top up. Its perfect for the times when perhaps a tiny bit of sugar is all that you need.

I dug around in my son’s room trying to figure out where he has hid his Dex stash this week.  It was in the chair beside his bed–under the blanket, the hoodie, the pillow and various other articles of clothing.  The next challenge was to find tablets. Every time I grabbed something it was a bottle of liquid glucose.  I finally found a small container of tablets which of course was sealed.

How the heck is a person who is low supposed to get into those things? They are sealed, stretched and locked up tighter than anything else! I remembered that there were scissors on a table in the room. I grabbed them, cut open the tablets and eventually was able to feed my son a couple of tabs.

I headed back to my room to catch up on 2am Facebook and Twitter.  After 15 minutes, I rechecked to see if it was safe to sleep. It wasn’t.  He had dropped.  I dug back in the stash.  It was time for a bottle of liquid glucose. He loves this stuff but once again I was faced with the difficulty of getting it open. I finally slid my nail around the neck, got it opened and convinced my still sleeping son to drink on demand.

By 3am all was good and I could go back to bed and try to sleep but I was still stuck with the thought of what if I was the one low?  Would I be able to open the tablets? How would I get open the bottles?

glucose tablets

I guess you have to plan ahead and have the seals broke before you go to bed or have someone else willing to crack them open for you.  Not good. Not good at all.

 

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