A Diabetes Vacation

Technically I am on a diabetes vacation.  There is no night time testing. There is no carb counting or yelling out "did you test?".  There are not even any text messages asking "What is your bg level?" The phone smashing to the floor of McDonald's and never recovering took care of that one.

My son is visiting his brother and his father. He is now in charge of his care.  This does not make my life as carefree as it sounds. I sit here, hundreds of miles away from him, and worry, think and wonder what he is doing. Is he testing? Did you change that site? Does he have a new cartridge in? How are his readings going? Has he been low? How high have his highs been?

I do try to not think of diabetes 24/7.  I have tried to limit my worry and let him enjoy his time away. Before I dropped him off, there were numerous pep talks. There were a lot of reminders. After a bit he said, "Mom, this is me you are talking about.  How can you think that I wouldn't test or remember these things?"

Um, perhaps because I live with you!

While we wait for me to have the chance to switch his phone over to another model and mail it to him, its messages through his brother and daily phone calls when he gets up to go over readings. I would love him to call twice a day but this is where Mom has been good. He needs his space.  He needs to do his thing.  Mom has to wait...and I have.

We have had calls that consist of...
"7.8 at 10pm, 13.1 at midnight, 4.0 at 3 am, etc."  but we have also had calls that were "Yeah, I was a bit high but I ate that bread and messed up the bolus."  Followed by, "okay we will go over specifics on another day when you have a bit of time.  Have fun! Love you!"

The vacation is tough. Its strange having no children and no diabetes.  Its great to be able to rollover at night but there is a lot of prayers at the same time. If I woke up was there a reason? Did he wake as well? Is someone watching over him? So far, yes to all of the above.  He has been doing well with his care and is great at calling.  The honeymoon may wear off and teen forgetfulness may creep back in but only fourteen more days.  Soon enough I will be back to complaining about sleepless nights once again!

Summer Vacation brings Mommy Anxiety levels to a new high

School is officially over and my nerves are already staring to fray.  Despite a very slow start to summer (as in I am still waiting for it to truly arrive!), my son's insulin needs have managed to plunge dramatically. I have adjusted carb to insulin ratios and numerous basal rates over the past few weeks to no avail. 

I have been religiously pouring over log sheets trying to establish patterns and set rates. I have tried to guess future activity levels and needs. Despite my valiant efforts, I am failing miserably. 

Tomorrow my son will be heading off for the first official leg of his summer vacation--a few weeks with his father and brother. I am verging on pure panic and trying to appease myself knowing that there always seems to be a guardian angel watching over him when he is away.

I have a book that I will be carrying around and we will set up times to call when he can give me his readings. I know he will not be pleased to do this but 5am lows followed by mid-afternoon highs and early evening crashes are going to be the death of me otherwise. 
I try to make sure that he is running high before he goes away.  The reasoning behind this is two fold.  One, I know he tends to be on the go more and eating less when he is away.  I also know that he tests less and forgets more when Mom is out of sight.  I would rather him run high and be off in the woods playing with friends than be low and get himself in trouble in the same situation. At the moment, I am not sure that I have accomplished this. I will be doing a bit more tweaking today and then saying a lot of prayers!

Technically this will be my two weeks off. I will be able to sleep through the night but I won't.  I will worry that he is not checking himself and all of the worst things that could happen. He has a deal with his father where by they alternate for night testing. Its probably a good thing but it still makes me nervous as neither have been very good at retesting after a late night low. I also know, as many people have told me in the past, when Mom isn't there to act as his safety net, he will (and does) step up to the plate more.
So as of tomorrow night I will have to shelve my worries. I have to remind myself that he is going to have fun and catch up with family and old friends. I will text.  I will call. He will eventually answer. I will be counting the days until he comes home and he will be counting the days until he goes back. All I can do is pray a lot, keep my concerns to myself, and hope that all I have taught him is starting to sink in and that he will surprise me with his care while he is gone!

When perfect isn't so perfect

I was tempted today to just re-post My Favorite Number blog.  It kind of fits with my night. My son's readings have been all over the map. I am sure that is in keeping with the crazy weather--one day summer and six days of late fall. We have days of extreme activity followed by days of xBox and Dukes of Hazard movies. Add to that sites that are usually left a day or two longer than they should be and you can see blood glucose anarchy quickly developing.

Last night I expected highs.  He had a totally lazy day so when I looked at the blood on his finger as I tested, I predicted that it was of the "high" consistency.  Wrong! It was of the "crap, which way is it going to go" consistency.  He was perfect. He was 5.2(94).  It was 3 am.  What was he going to do for the rest of the night? Would he go up? Would he stay the same? Would he drop? Perfection is rarely achieved. What was I to do?

At 3 am, I hedge my bets that he will drop and feed him two glucose tablets.  I stumble back to bed hoping that I haven't sent him nice and high for his first full day of summer vacation.

When I woke up the next morning, I got up and tested him again. I was positive that I would see a 9(160). I was sure that I had driven him up. Wrong again! He was low.  I went out to get him some juice but of course we only had Crystal Lite.  Okay, I will add sugar to it! A few big spoons full of sugar and off I went to wake him up and get him to drink. I don't normally wake him but its morning and I was up so he could be also!

After a glass of sugary juice and he only went up to 3.5 (65ish).  Next stop was tablets.  I fed him at least another four.  As he was eating, in his sleep, I couldn't help but think "Rockets--the breakfast of champions!"   I so need a life!

As you can see its been a fun filled start to summer vacation. He will be heading off to his father's for a few weeks soon so I had better get things a bit more in control by then. Wish me luck!!!

Kevin Kline tells it like it is

I am not American. I do not follow the celebrity gossip. I do watch movies. I know who Kevin Kline is and I like his work (who can forget "The Big Chill" or "A Fish Called Wanda").  I may have heard that he was somehow involved with diabetes but then again so is Cliff from Cheers (aka John Ratzenberger) and many other wonderful "celebrities".  Today I watched a clip that made me realize that he is more than just a great actor, he is a father.  He is not just any father.  He is a father of a child with Type 1 diabetes who wants the world to know that we need better for our kids.

Today he told the world that "Once you have a child with diabetes you immediately stop being merely a parent.  You become a doctor, nurse, nutritionist, expert." Mr. Kline when on to point out that diabetes never stops and worries never sleep...and neither do the parents.
For a change, the interviewers seemed to get it. Diabetes was taken seriously during this interview.  The only part that saddened me was the focus on technology rather than a true cure.  I appreciate technology.  I have seen incredible leaps in the eleven years my son has been dealing with this disease and I am forever grateful. I am a bit more content knowing that he will most likely have CGM technology to take forward in his life but he will still have to wear it.  He will continue to be a walking robot with a number of machines needed to keep him alive. He will be alive but there will also be a cost...a huge financial one. 
At the moment, we have difficulty having insulin pumps covered under our health care system depending on your age and where you live. How will my son afford his pump AND a CGM as well as all of the other "stuff" associated with this technology? That truly scares me. It is something that he will have to consider when both chosing a career and deciding where he will live.
I do not want to take away from the message of Mr. Kline however.  He showed true emotion as a father of a child with diabetes.  You could see the worry and sleepless nights in his face.  He described diabetes as being similar to having a newborn all over again.  With a newborn we carefully listen for breathing and fear SIDs.  With diabetes, we also watch breathing but fear ketones, Dead in Bed, and medical malfunction to name a few.
Just after watching this interview, I scanned through my Facebook news and noticed blue candles. Another child had died.  He was a teen aged boy, just out of high school.  This morning I received a memorial from a family of a 24 year old young man who had died because his diabetes became too much of a burden for him to carry. 

Its all very overwhelming. I pray that the American politicians listen to what these JDRF delegates have to say.  I pray that the world listens as well. Together we can work towards a cure not just a larger bandaid. Together our children will live long and healthy lives.

The Evil Pancreas Minions vs...well me of course!

I recently went to Chapters and bought myself a few books. I love reading Deepak Chopra whether it be his fictional works or his more serious spiritual works.  He always gets me thinking.  This morning I started reading his book "The Book of Secrets".  Its all about "Unlocking the Hidden Dimensions of your Life". 

As I moved through the first few chapters, I read something that sent my mind reeling in a direction that I am positive the author did not intend.  He wrote that intelligence was found in other parts of the body beyond the brain. Organs such as your stomach and liver actually "think".  This got my over-active imagination heading down cartoon alley.

I could instantly picture what had happened with a diabetes diagnosis.  I have often referred to diabetes as a living thing. I personify its evil nature and discuss it as if it were a spoiled child.  It turns out that I am right! The way I see it, if Type 1 diabetes occurs because of impaired beta functioning in the pancreas then the "brain" of the pancreas has been injured.  The result is confusion and mayhem.  The minions left in the pancreas have no true leader.  Their brains are addled. 

As in any state of chaos, groups or small armies of these minions will form.  They are the evil forces that cause highs and ketones.  A rival gang contributes to lows and people becoming hypo-unaware.  When we speak of the diabetes gods plotting against us, it is in fact these minions plotting and using their injured brains to wreak havoc in their world which creates more insanity in ours. 

I could create an entire movie out of this.  The end result would of course be a cure.  The pancreas would receive the mind altering treatment that it needed to control its evil minions and those living with diabetes would be saved! It would be huge--a true block-buster! The treatment would be delivered not by doctors in lab coats but by super-heroes in cool costumes. 

I can see it all now!! If only we could do this in real life but a small flight of fantasy away from the realities of the evil minions is not so bad is it?

The "LOW" down on a 13 year old's Party weekend

What a weekend! Friday, my son came home from school and wanted to go to the fair with his friends that evening. Where was the fair? At the other end of the city of course! Well, the school year is coming to a close and some of these boys will be going to a different school from my son in the fall, so I agreed to allow him to go.  He had glucose, meter, pump, cell phone and was set. 

As I picked him up later that evening I was rather amazed. My baby had been out in a city without me or his older brother, walking the streets at night and I had allowed it? He was with a crowd of a dozen or so other young people so there really was no danger involved. It was just scary that he was old enough to have this sort of responsibility.  He had tested and all was fine but I knew that after walking for five hours on a fair ground and goofing around with his pals that Diabetes would get its revenge.  It had behaved while he was out.  There were no lows to worry about so you know that the night would be rough! 

This was one night that I decided to be proactive. I put on his "low" basal was sure I would give myself a small reprieve.  When I tested him at 3am he was perfect. I gave myself a mental high five and went back to bed with a small glow of victory. I had beat Diabetes at is own game this night!! Oh yeah!!

My victory was short lived however. There was to be no sleeping in on this Saturday morning. I hadn't extended that reduced basal rate and Diabetes took advantage causing him to be low.  We all got up, showered and headed out to breakfast instead. Take that Diabetes!

Later that night was party number two for my social young son.  This party I knew would be active.  A group of boys were headed off into the woods as we arrived but I was more concerned with making sure that he again had all of his supplies so I didn't think to adjust any basal rates. After a few hours, I sent him a text and asked if he had tested. He said he was just about to do it.  I waited.  An hour later I received a second text..

"I am 3.4.  Took 4 tablets."

3.4 (62) Crap! but at least he had treated. I called him back and told him to retest and put that "low" basal rate on.  I waited and sent another text asking if he had retested.  He assured me that all was okay. 

We got home after midnight that night and once again I double checked to see if the temporary basal rate was on. This time I also made sure that I reactivated it when I tested during the night. I was going to beat Diabetes this time! Wrong.  I may have delayed things but Diabetes continued to send my son low multiple times during the rest of the day. I was really getting tired of this.

Sunday evening I sat down with the meter, pump and my son. I got out the log book and got serious.  I made carb to insulin ratio adjustments. I analyzed basal rates.  I changed profiles to allow for summer late nights, later mornings and increased activity levels.  Once again I was confident that we would at least see a few days of good readings.

Wrong.  Diabetes kicked my butt once more.  The night was fine but by 8am things were going down hill fast.  3.0 (54), four glucose tablets....3.0(54) another four glucose tablets and a few choice words...5.6 (100) victory but by then I was wide awake. So much for sleeping in on a stormy Monday morning. My son got up as well, complaining that his mouth felt like he had eaten a tonne of sugar...well you did!

I have more changes to make before my son heads off to visit his father for a few weeks. If this keeps up, my nerves will be shot before he heads off on his own.  The reality of diabetes is that once I get these rates just perfect, he will have a growth spurt and we will be fighting highs for the next two months. I so love this windy, twisted road of life with Diabetes...grrr! Give me strength!

Little Fingers

We recently enjoyed the company of a lovely twenty-three month old little girl for a day.  It was a big change for us because other than her, we have no real dealings with small children and haven't for years.  I see my nephews only once every couple of years and any other children we are around tend to be a lot older.

We learned about Special Agent Oso and Thomas the Train.  She had fun coloring and playing in strange places and I got reacquainted with the art of changing diapers. As lunch time approached, she plopped herself down at the spot where my son had laid out his lunch fixings. He had bread and jam, which she was interested in having herself.  He also had his meter and lancet.  I watched as she looked them both over. I was nervous that she would accidentally lance herself but she just continued to investigate. 

As I watched her, I realized that she is the exact same age that a friend's daughter was when she was diagnosed with Type 1 diabetes. I remembered that my own child was only a few months older than her when he was diagnosed. I saw those little fingers that wrapped around mine to take me to her next place of discovery and was immediately sent tumbling down the rabbit hole. I remembered that when my son's fingers were that small I used to have to cover them with blood before he ate. I remembered how he never flinched when I injected him but would refuse to eat anything that was put in front of him. I remembered my tears of frustration and his cheeks bulging with the food that he put in his mouth but would not swallow.  I prayed that she would remain the healthy little girl she currently was and would never experience any pain or disease.

She was soon off again, searching for my son and wondering what her grandfather was doing.  She played with the dogs and eventually sat down to watch TV before having a nap.  I was ready to nap with her but shook it off and made some blueberry muffins instead. 

After a short nap, she was recharged, refreshed and ready to go again.  She found a new place to play under the kitchen table and amused herself for quite awhile.  After some serious playing she had worked up and appetite and looked at my fresh muffins with hunger in her eyes.  I gave her a bit and my son had the rest.  I told him the carb count and automatically calculated the carbs in the piece of muffin and small yogurt that our tiny guest had.  I smiled when I realized how automatic this was and again, I said a small prayer hoping that she would never have to worry about the carb count before eating any of her meals.

For years, I could not look at small children. I would see them toddling off to preschool and entering their kindergarten classroom and the memories would come flooding back. They were so small.  My boys were that age once.  When my youngest was that age he had to bring a meter, spare juice and a needle.  His mother went everywhere with him.  I watched for stumbles that were not from untied laces but from blood glucose that was dropping without warning. There were bumps, bruises and cuts from missteps when low but we had made it to the teen years.

Now he is a tall young man who will soon be looking down on me.  He lives in the fridge and has friends all over town. He spends days away from Mom's prying eyes.  He boluses and tests on his own.  His hands are calloused from testing and his fingers are no longer covered in blood when he tests.

No one should have to live with this disease but despite it all we are...we are living our life and enjoying each day.