3 Years

It has been a long time since I wrote anything.  April 12 was Nathanael's 3 year diaversary.  I can't believe that it has been 3 years.  Some days it seems like we have been doing this forever and other days we are just newly diagnosed.  We have learned so much. The one thing we have learned is that diabetes doesn't play fair.  Diabetes requires constant managing and monitoring.  We can do the exact same thing every day and get a different outcome.  I ask a lot of questions, What did you do different? What did you eat? How much insulin do you have left in your pump?  How can you be low, you just ate?  How many carbs are you eating? Did you bolus?  How much active do you have?  These are all questions that I never even thought of 3 years ago.  3 years ago I never asked my son if he was high or low.  Now this is just our standard conversation.

I tell my son how lucky he is to have a mom feed him starbursts in the middle of the night to treat a low.  How many other kids have parents feed them candy in the middle of the night?  Too many.  Too many kids depend on their caregivers to be their pancreas.   Too many caregivers worry if their child will be safe during the night.

We have been very fortunate to not have too many scary events with diabetes.  Nathanael has high days and lows at night.  We are always able to get him back under control.  This past week we had a very scary night.  This was the first time that my fears were starting to come true.   I test him at 10:30 pm before I go to bed, he is 60. I grab the starbursts that are by his bed and start feeding him. Wait and test, lower. I run up stairs to get more stuff. Feed, wait, test, lower. Temp basal pump, Run, up stairs, get something different, feed, wait, test, lower. Now my son is starting to ask for the glucagon, which we have never had to use. Test again, this time going into the 30's and dropping fast. I have the glucagon now by the bed but refuse to use it, keep feeding him carbs, 7up, liquid glucose shots, glucose tablets, Capri sun, starbursts. Finally start to rise. Finally after an hour. He's asleep, I go to bed. Test him in an hour, 126. With the amount of candy he had, should be good for the rest of the night, wrong. 2:30 test time, back down to 59. Run up stairs, grab Capri Sun, another can if 7 up, more starbursts, liquid glucose shot and back down stairs. At this point, Nathanael takes his pump off completely.  He says he is done with his pump for the night.  Feed, wait, test, lower. Feed more, wait, test, starting to rise. Finally back above 100. I pray he stays there. Alarm set to test again in 45 minutes. At 4 am his number is finally 250.  I put his pump back on and go back to bed.  When I tested him after my shower, his number had come down about 20 points.  So glad that was over.  I'm so glad I decided to test him at 10:30.  Lord knows what would have happened to him.  He was clearly scared.  He didn't want to go to sleep.  He was begging me to stay home from work on Thursday and him stay home from school.  He has never been so scared and if he has been, he has never said anything.

The next day he had a track meet.  He is a thrower.  His number stayed relatively low all day.  It was very warm as well.  I watched him warm up with his team.  I was concerned about how his blood sugar was.  He always tells me, it's fine.  He was getting ready to throw the javelin and I had him test.  This was the first time I was able to get him to test.  He was in the 70's.  So he eats some starbursts and a granola bar.  He tests again and his number was higher.  He performs his best when his blood sugar is between 120-150.  He completes the javelin.  He was able to throw it 80 feet.  Not his best but I'm still very proud of him.  In between events, he wanted some food.  So he got a hot dog.  We looked up the carbs on the bun wrapper.  He tests and take insulin.  Just what he is supposed to do.  Within 15 minutes he was dropping.  And dropping fast.  After 3 liquid glucose shots, numerous starbursts, and a regular Pepsi, his number started to come up.  He decided that he didn't feel comfortable throwing discus so he withdrew from the event.   There will be other track meets.  I don't usually allow diabetes to control what he does.  But after the previous 20 hours, I respected his decision.  I have no idea why his blood sugar wouldn't stay up.  Part of the reason was the heat and his exercising.  The only thing I can assume is that he had changed sites Wednesday evening and he was getting really good absorption. After camp last summer he starting using the back of his arms.  He numbers have been much better there.

If I have learned one thing, is there is no standard.  You can do what you were trained to do and diabetes will do what it wants to do.  Diabetes isn't like other illnesses where you take a pill and get better or you take the same dose every day and you get the desired outcome.  It changes from day to day. All I can pray for is one day there will be a cure.

A1C Check up

Today was Nathanael's 3 month check up.  Or should I say his 28 month check up since diagnosis?  I knew this A1C wouldn't be as good as his last one.  Summer has been tough.  There is no routine.  He stays up late, sleeps late, eats whenever he thinks he is hungry.  He also had a week where he was completely on his own while he was at music camp.  Amazingly, he did pretty well at camp.  Being at home is the problem.  He has days where his number just continues to rise.  I know he is eating without taking insulin.  He was running in the 300's, 400's, and even hit 500's.  So the big number today was 7.2.  What??  7.2?  At last check, he was 6.9.  That's not too bad considering the month he has had.  The doctor was even surprised it was that low.  Also, my little boy is now 5.8 and 174 pounds.  He sure isn't little anymore.  He is going to be in high school in just a little over a month.

This past weekend has been a tough weekend in the T1D world. Two young children died after being misdiagnosed.  Both young children were thought to have the flu.  Turns out they had diabetes and when it was discovered, it was too late.  A very precious little girl Kycie Terry fought a very tough battle after having seizures that left her with brain damage.  She was a fighter!  I have followed her story since January.  Her parents have shown such incredible strength and courage the whole time.  Then on Saturday, word came of a 4 year old boy in Michigan was in ICU after having a serious of strokes.  He was just diagnosed on July 8.  His little body couldn't recover.  On Sunday, he was taken off life support and died a short time later.

My heart just breaks for these two families.  I too wonder, like many other parents of children who have diabetes, why testing for diabetes cannot be standard protocol when showing flu like systems.  We were very lucky.  Nathanael had all the classic signs.  Diabetes was the last thing from my mind.  His systems from the beginning were a stomach ache and headache.  Then he started getting dizzy.  It wasn't until we put him on medication for possible acid reflux that he started drinking a lot of water.  Then he started having accidents at night.  I saw a post today where a dad posted on the Pull-ups Facebook page to put a warning on the big kid packages that when your child is potty trained and all of a sudden cannot make it through the night without having an accident, that they should be tested for diabetes.  What a great idea to spread awareness!  

We need a cure but most importantly we need awareness.  We also need understanding.  There is so much misunderstanding with diabetes.  Today, Nathanael was told he can eat whatever he wants.  He can eat as much as he wants.  However, whatever goes in his mouth, he needs to take insulin.  Of course, this isn't what this mom wants to hear.  But he needed to hear from his doctor that he needs to take insulin for EVERYTHING he eats.  Yes he can have a regular pop.  He can have candy.  He can have ice cream.  Are these things good for a person with diabetes?  The question is are these things good for people without diabetes??  YES diet and exercise will help him lower his blood sugar.  Diet and exercise will help EVERYONE without diabetes.  He didn't get diabetes from having too much sugar was he was an infant.

April 12, 2013 to April 12, 2015

Everyone has certain days in their lives where they will never forget where they were and what they were doing.  April 12, 2013 is one of those days for our family.  Two years ago today, our lives were forever changed.  My son was diagnosed with Type 1 Diabetes.  I'm still amazed that it has been two years.  Some days it feels like we have been doing this our entire lives, other days I feel like we don't have a clue.

This past year, Nathanael has become a pumper.  Pumping has made things so much easier.  He has been more independent at school.  Sometimes too independent.  He sometimes forgets he has diabetes and just doesn't want to deal with it.  I can completely understand.  He is having to stop and take time out of his day to take care of himself, 14 year old boys should not have to worry about taking care of their body.  None of his friends wear their pancreas on the outside of their bodies. None of his other friends have to eat a snack during gym.  None of his other friends have to take a small backpack of supplies when they go for a bike ride with the neighborhood kids.  But this is Nathanael's life.  He takes it in stride.  He does get frustrated when his blood sugar is higher than it should be.  He doesn't look at the clock to see when the last time was he ate, he doesn't think about the food that he did eat.  Certain foods will keep him high longer than others. Some foods will send him through the roof in what seems like a split second.  Oh and don't forget those factors he has no control over, growth hormones and stress.

Here are some of the things we have learned in the past 2 years.  Every year, we learn just a little bit more.

• Carb counting.  This is something that we have to do every single time Nathanael wants to eat.  He has to know how many carbs are in what he is eating or drinking.  We try and stay away from  drinks that have carbs in them just for convenience sake.  Yes he can have regular pop but he should be able to drink pop without having to take insulin so he drinks diet.  He mainly drinks flavored water or tea.
• Diabetes doesn't play fair.
• Blood sugar will almost always be low when I want to sleep.  I get up 2 times a night to check his number.  Once at 11:30 pm and once at 1:30 am.  Normally, I can check his number and be back in bed within 3 minutes.  But when he is low, it takes at least 30 minutes to bring him back up to a safe number. 
• Blood sugar is almost always low when it is time for bed.  Nathanael thinks it's funny but if he is going to have a low, it will be when I'm trying to get him off to bed.  He has almost always brushed his teeth and the last step before heading downstairs to his room is check his number.  
• Nathanael doesn't listen any better while sleeping than he does when he is awake.  Getting him to eat or drink something in the middle of the night is a challenge.  Once I can get him to a semi-conscience state, then he will eat and drink.  There are times that I go to check him and he opens his eyes and looks straight at me.  When he does that, he is low and we are in for the long haul.  
• Starbursts, granola bars, peanut butter sandwiches, and Capri sun juices are our friend.  When Nathanael is low, he needs fast acting carbs.  He normally needs 30 carbs to bring him up and keep him up during the night.  When he is sound asleep, he get juice along with glucose tablets.  If is he somewhat awake, he will get a granola bar to help keep him up.  
• Exercise does make a huge difference.  Since January, Nathanael has been doing what is called active adviser at school.  This is a time in his day where kids have time where they can do homework.  He has been going to the gym instead and playing volleyball or basketball, etc.  This really helps his number in the afternoon.  He has PE every other day.  This has really helped keep his number down. The downside to all the exercising, is sometimes he over compensates for his low and they goes high later.  
• Moderation is the key.  Try telling this to a 14 year old growing boy.  Yes he can have the chocolate Easter bunny but that needs to be all for the snack.  Yes he can have girls scout cookies but one serving is sufficient.  He has really had to learn that he may not necessarily need a snack.  He has to stop and ask, do I need it or do I want it.  He is having to practice what every single person needs to learn how to do, eat in moderation and eat in servings. 
• I can normally tell if he is running high or low in the middle of the night by touching him and listening to him.  When his blood sugar is high, he moans.  I can tell he isn't comfortable.  When he is low, he is clammy.  I can tell when I pick up his hand to prick his finger.  

Know the warning signs of diabetes.  Before he was diagnosed, he was drinking a lot of water and complaining of stomach aches everyday.  Then the stomach aches turned into dizziness.  He did lose weight but it wasn't noticeable.  We caught it early.  

Scary

Parents and care takers of children with Type 1 know how scary this disease can be.  The common theme of the majority of the posts that I read on Facebook have to do with how unpredictable and frustrating this is. We have been fortunate to have not had too many roller coaster days.  But when they do hit, they are very scary.

A couple of weeks ago, we made some changes to Nathanael's settings.  He started to see an endocrinologist.  We never got established with one because there wasn't one in our town.  I asked his doctor and his diabetic educator what an endocrinologist would do that we weren't doing already.  So I was comfortable with the level of care we were receiving.  We were fortunate to get one to come to town.  His specialty is Type 1. Nathanael and I went to a talk that he was doing about Type 1.  I wanted Nathanael's opinion about the doctor.  He really enjoyed the talk so I made an appointment.  The doctor's philosophy is to not change too many things at once.  He likes to make one change at a time and see what happens. The first thing that he noticed was that Nathanael's basal settings were too low.  He wasn't getting enough insulin throughout the day.  That causes him to take more insulin at meal times.  The other problem that I have with Nathanael is that every time he checks his blood sugar, he will do a correction, even if he still has active insulin.  By doing that, he is building up the insulin, then at night when it all wears off, he crashes.  So the first step was to increase his basal rates and we also change his carb ratio.  At first, he ran higher than he had been.  Now it seems that he is adjusting.

The other night, his numbers were running pretty good.  He went to bed his number was 120.  He had no active insulin on board.  Then 45 minutes later, he comes upstairs to the kitchen because he couldn't sleep.  Normally he goes right to sleep.  He checked his number and he was 53.  Where in the world did that come from?  He took 3 glucose tablets and rechecked a few minutes later.  Now he was 46!  He was on a fast drop and had he gone to sleep, who knows what cold have happened.  I normally check him at 11:30 and 1:30.  It took a liquid glucose shot, a roll of smarties, and shutting his pump off for a bit before he started to rise.  I asked him when he was coherent again if that scares him.  He said yes.  We have been very fortunate that Nathanael hasn't had any complications from diabetes.  He has never been in the hospital and has never had DKA.  He has been very lucky.

One thing we don't do is dwell on the whys.  He actually never asks.  I do question why in the world did he all of a sudden drop.  I ask him if he did anything different that would have caused it.  He did change his reservoir earlier in the evening.  He does go down with fresh insulin so that could be it.  I have chosen to not dwell on the whys for too long.  We have been dealt Type 1 for some reason and now we need to just live with it and move on.  Yes my husband would say that I'm obsessed with it.   And obsessed with trying to keep Nathanael safe.  And he is right.  I am obsessed.  I worry when he goes to bed.  I worry when he goes to school.  I worry when I don't hear from him when he is home alone.  I worry when he is at a friend's house.  Will he set his alarm and wake up to check in the middle of the night?  I'm just a mom worried about the safety of my child.  I don't know too many parents who do not take their children's safety seriously.  I also don't know too many moms who wouldn't bend over backwards to keep their kids safe.

3 Month check up

Today was A1C testing day.  This is the second test since being on the pump.  The first one was after taking a vacation from his pump while at Bible camp.  That didn't go so well but his A1C was 7.9 in July.  So today his A1C was 7.6! He is staying pretty consistent.  I think we are going to make some more adjustments to his settings to bring him down just a little bit more.  Ever since we got started on the new pump, his numbers have been higher.  It is nice to have a tester that communicates with the pump.  He is also liking the fact that all the information is on the bolus screen.

New Pump

Look what arrived today!  Nathanael is very excited about his new pump.  I got everything all set up and he is up and running.  It will be nice to also have a tester that communicates with his pump so all of his readings will be captured.  

Officially approved!!

Nathanael received a pump back in March from a very generous person here in town.  We didn't go through the official approval process with insurance.  His numbers have been really good since he began pumping.  His last A1C wasn't a clear reading with his pump because he took his pump off for a week while at camp.  That wasn't exactly a good blood sugar week.  A few weeks ago, Nathanael and I went to the Take Control of Your Diabetes conference in Missoula.  I talked to the Medtronic rep and the T-slim rep while there.  We decided that now is the time to get him a new pump since we have met his deductible for the year.

Medtronic went through the whole process to get Nathanael approved for a pump.  We got the letter on Saturday that he has been approved!  So very excited that he is officially approved to be using a pump.  The pump has made a huge difference in his diabetes.  His blood sugars stay lower and he also comes down faster than when he was on shots.