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.

Complaining

I don't complain about my son having T1D.  Yes I was upset and scared the day he was diagnosed.  I didn't really know what a whole lot about diabetes and didn't know what it meant for us.  We took the diagnosis and just started our new life of carb counting and insulin. I talk a lot about his diabetes but I don't complain.

Today has been one of those days that most people complain about.  Nathanael has been having really good numbers since he came back from camp.  In fact, we have been battling  a lot of lows especially at night. This was completely new to us.  So we have been trying to get him to eat some protein before bed to help keep him elevated.  Well, he really likes peanut butter.  He also doesn't like to measure.  So he has been having night time highs because of it.  It's been working out because he gets up at normal numbers or even lower than we are used to.  Nathanael's night time number last time was too high for comfort.  He was in the 300's.  So he got insulin at 2 AM.  Then at 6 he was still in the lower 200's.  So he got more insulin.  I figured he would need to do a site change.  I just let him sleep and got the supplies out for him to do it when he got up.  Of course, being 13, he doesn't like to take care of himself first.  So it took him a little while to change his site and his reservoir since he was almost out of insulin.  He did go lower initially after his site change and then he ate lunch.  I called him during my lunch time to see what his blood sugar was and he was 540.  I couldn't believe it.  He has been doing so well.  He ate 5 corn dogs for lunch.  I was sure he underestimated the carbs.  He doesn't look anything up.  He just guesses.  But after doing the math, he was only under by about 20 carbs.  That isn't that big of a difference to go so high.  He gave himself more insulin and I told him to check in 30 minutes, drink lots of water, check for keytones, and drink more water until he felt like he couldn't drink anymore.  He did have slight keytones so I told him drink more.  After 30 minutes, his blood sugar had gone up another 20 points.  He took his site out without me telling him to change his site and low and behold, his canula was bent. He changed his site again, gave himself the insulin that he didn't get at lunch.  So after another 30 minutes, he dropped 100 points.  The rest of the afternoon he has been dropping.  Supper tonight consisted of scrambled eggs. No carbs so he didn't have to take any more insulin.  He took 4 more units at 5 PM.  So hopefully by bedtime he will be back in normal range.

It's days like this that I can see why people get so frustrated with diabetes.  I just don't complain about what I can't change.  I try to get Nathanael to understand what is going on.  He gets so upset when he's running high.  I try and get him to stop and think about how long it has been since he last tested.  How long he last ate.  What did he eat.  He just needs someone to explain to him that when he puts 5 pounds of peanut butter on 2 pieces of bread that he is going to go high and stay high through out the day.  I try to explain I don't care what you eat or how much, but it needs to be measured and carbs counted correctly.

Tonight he was doing dishes and starting to get really frustrated.  I made him quit and take a break.  He was headed for a breakdown.  He laid on the couch in complete frustration.  His blood sugar was still coming down.  He gets frustrated about the littlest things when he is high.  So as he laid on the couch, I sat with him and reminded him of what he learned at camp with regard to yoga.  He really wasn't impressed with yoga but it taught him some deep breathing. So I helped him with his breathing to calm down.  After about 4 rounds, he said, I feel much better now.  I then explained to him that when he starts to feel that way he needs to learn to take a break and calm himself down.  It does no one any good with him frustrated.  When he gets frustrated, his blood sugar just goes higher, he get angrier, then gets more frustrated and he just keeps going up.  It's a terrible cycle that only he can break.

I just hope that he can learn to deal with all of this when he is completely on his own.  That way he won't have to live a frustrated life with T1D.  He has never complained about how terrible diabetes is.  Yes it isn't a pleasant thing to have but he has adjusted well to his new life.  Ever since diabetes camp, he has been doing a really good job in taking care of himself.  He doesn't hide his pump on the inside of his shorts.  He was even given a medical alert bracelet from his grandfather that belonged to his grandmother.  He never wanted to wear a bracelet until his grandpa gave it to him.  He wore it for 3 days before I told him that we would need to have type 1 engraved on the back.  (Diabetic was already engraved and I wanted Type 1 put on there.)  When I came back from the jewelry he asked if I was able to get it engraved.

I feel that God doesn't give us more than we can handle.  I also believe that Nathanael was chosen because he can handle this.  I'm also very thankful that we live in a part of the country where Nathanael doesn't have to deal with ignorance.  He doesn't get the comments like "you got diabetes from eating too much sugar."  I don't have friends who post not so funny diabetes jokes on my Facebook wall.  We live and associate with a pretty understanding community.  Should he be eating donuts?  The question really is, should any of us really be eating donuts?

New name for Type 1 Diabetes

We just started our second year with diabetes and it already feels like a lifetime.  Our everyday language and conversations has dramatically changed.  We never had to take time out before each meal to count and measure what we were eating.  Our language now contains questions, "What's your number?", "Is he high?", "Is he low?", "How many carbs are you eating?", "Have you checked your blood sugar?" and the list goes on.

I have let him do the things he wants to do.  This summer he got signed up for 3 camps.  I had a few people tell me how brave I am to let him go.  But I figure, your only a kid once and he has to learn how to live with his diabetes.  It isn't easy for me to let him go.  The biggest reason is that people just don't understand what diabetes is.  They don't understand how serious it is.  They also don't understand that we are only a little more than a year into this and he is not responsible for himself.  He needs someone to remind him to check his blood sugar, to count his carbs and to plug all that into his pump.When he was gone to the first camp this summer, he did pretty well.  He had one day where his pump site came off and he couldn't get it to stay on.  (He might have had better luck if he would have showered more often. :)) He tended to run on the lower side. Then came Bible camp.  Here there is one counselor for 6 or 8 boys.  I talked to the counselor and told him that Nathanael needed to check his blood sugar regularly.  His sister was there so I figure if there were any problems, she would be able to help.  Well, at the end of the week, I find out how camp really went....AWFUL!  He took his pump off on Monday and switched back to shots.  This would have been fine, if he was checking his blood sugar often.  Nope, one day he only checked once!  His sister also told his counselor that he needs to be reminded to check his blood sugar.  He ran really high the whole week, except for the one 39 that happened at 10:30 at night.  That was the day he only checked once.

Ever since he has gotten back from Bible camp, I have been trying to figure out what to do about camp next year.  How do I explain to the counselor that this is serious?  Well, today, I figured that I will no longer say he has diabetes.  I will say "He has a condition where his pancreas is broken and does not produce the insulin that the body needs to break down carbs.  He has to check his blood sugar to make sure that he isn't going too high or too low.  If he doesn't, he can die."  People just don't understand what diabetes is.  I am fortunate enough to live where we don't get questioned too often about what we are feeding him or how we are treating his illness.  We have a good school nurse who keeps a good eye on all the kids in school with T1D.  But how do I make the rest of the world understand.  I understand that the only person in this world who can take care of Nathanael is Nathanael but I count on adults to watch over him.   I count on the adults to hold him accountable.

So from now on, my son doesn't have Type 1 Diabetes, he has a condition where he can and will die if he doesn't pay attention to his blood sugar.