Setting up a Plan for T1 Diabetes at the Junior High

Our son had just been released from the hospital as a newly diagnosed kid with Type 1 Juvenile Diabetes, so one of the first things we did was go to his school to set up a plan for him to manage his diabetes at school.  

We had to meet with the school nurse and discuss how much insulin he needed and figure out where he would take his insulin.  I didn't really know what to expect as far as it being complicated or not.  I didn't think it was going to be a huge deal though.  

When I met with the nurse she had a whole health plan that I had to go over and sign and then she began to discuss where he would keep his insulin supplies and snacks and such.  For T1 Diabetes, he would need to have insulin, needles for his insulin pen, his blood glucose monitor, the emergency glucagon injection needle, and then snacks in case his blood sugar got too low during school.

The nurse told me that he was to keep all his supplies and his monitor locked in a cabinet in the counseling office.  She said at lunch time he would have to come in there and have them unlock the cabinet and then he could either do his insulin injection in the counseling office or the nurse's room.  From what I checked out, the counselors office was this big room with windows all around it, and the nurse's room was really gross and seemed more like what once was probably a janitor's closet.  I didn't really like either choice.  It was still new for him and he didn't want to be out in the open in the counselor's office especially if it was time for an injection site that might need him to pull his pants down.  And then the nurse's office just didn't seem very sanitary.  This was how it was set up, so I guess I didn't have much choice.  

The nurse was to be there at lunch every day to help him with the injections and make sure he was doing everything right as far as doing the right amount of insulin.  I was a little worried though when she told me that she did not always follow the doctor's orders and that sometimes she would tell the students to do amounts different than prescribed.  That did not seem very safe, so I immediately told her that she would do only what was directed by his doctor.  

I signed all the papers and sent him off to school the following Monday with a bunch of granola bars and a pack of juices.  It made me nervous, but I hoped he would be alright.  Little did I know that there were going to be a lot of problems at first.  

Coming Home with Type 1 Diabetes

We had checked out from the hospital and were on our way home.  It had seemed like we were at the hospital for an eternity.  I was nervous as I looked at the clock and wondered if we would get home in time to not mess up the regulated meal time that they had been having us use with our son to keep his blood sugar level.  

I called home and made sure my husband was making dinner.  This would be our first meal out of the hospital where we would be on our own for counting carbs and administering insulin, and we didn't want to mess it up.  I figured a packaged meal would be easiest as it would tell the carbs right on the side, so I suggested we just have Hamburger Helper.  

When we got home, the other kids had made a nice cute poster with Pikachu (a cartoon character called a Pokemon that our son liked) with a big Welcome Home on it.  I felt a little bad it was really windy so the poster had ripped in half and was hanging sideways.  It was the thought that counted anyway.  

Once inside we were running around like crazy trying to make sure we got everything right.  I couldn't believe there were so many different prescriptions.  Where was I going to put them all?  As a few of our kids have asthma, we have a whole shelf designated to asthma supplies and nebulizers, so now it looked like I needed to designate a whole shelf to Diabetes.  While I was trying to fit a million prescriptions on a small shelf, my husband was wildly making dinner and trying to figure out carbs.  

We were just so worried that if we didn't get our son dinner by 6 pm that something bad would happen.  It was kind of like bringing a new baby home from the hospital and not wanting to mess anything up.  We would learn to relax a bit more soon.  I hope.  

The counting carbs thing posed not so easy.  While Hamburger Helper did list carbs on the packaging, it was confusing because it listed a number, but we didn't know if this included the ingredients or just the dry stuff in the package.  Plus, it was confusing because it listed different percentages on the box from dry to cooked?  My husband was adding in the carbs from the milk added and then doing some mathematical equation to divide this and that to figure out the carbs when I was thinking that can't be right.  Plus, it suggested a serving size as dry and not cooked, so how was I to know how much an actual cooked serving size would be??!!!  I couldn't believe this could be so complicated.  Obviously we didn't know what we were doing!  How could they have let us come home?  

Well, as we are instructing our son to check his blood sugar, we are madly guessing on carbs and measuring out cups of stroganoff and milk and trying to guess if our spoonful of green beans is an actual serving size.  All this at the same time as trying to get 3 other kids situated at the dinner table was quite an event.  Plus they were wondering and asking why our son was getting all his food served on his plate while theirs sat empty.  

Well, in the craziness of it all, somehow we figured (guessed) on carbs, got his blood sugar checked, hoped we did the right amount of insulin, got it injected, then sat down to eat what was to soon be a "normal" family dinner?  We hoped things would get better and we wouldn't be freaking out so much.  I tried to keep my "everything is OK" face on, but I was slowly losing it on the inside.  

Day 3 and Final Day at the Hospital with T1 Diabetes

While the hospital staff were all nice and helpful, we really just wanted to get out of here.  It had been a long 3 days in the hospital, and we really wanted to go home.  It was a bit overwhelming though.  For the last few days they had been piling us with one thing on top of another.  Tons of information, tons of things we had to remember.  

If we didn't think we could handle anything more, we were wrong, because the last day brought doctors, pharmacists, and the social worker.  The doctors told us that our son would need to be seen every 3 months and later 6 months by an endocrinologist.  And they didn't just mean for a while, the meant FOREVER.  So yeah, basically the rest of his life, our son would need to be monitored by an endocrinologist.  This is what I couldn't quite get into my head.  This was not just a temporary thing.  This was FOREVER.  FOREVER.  This wasn't going to go away.  This was just that.  FOREVER.  

Another visit we had was from a pharmacist.  It was really intimidating having a pharmacist start telling you tons of information and listing off what seemed like dozens of new prescriptions you would have to get and keep filled.  It was even more scary when being in the hospital for days only using syringes and viles of insulin, when all of the sudden they are showing you this new insulin pen that you will use instead although you have never used one and you won't use it until you get home, so "I hope you don't mess up!"  

I couldn't believe all the things I needed to remember.  I was still trying to remember all the information they gave me and now I had to think about follow up appointments and knowing how often I'm supposed to call in blood sugar numbers to some hotline, and what prescriptions to pick up and then there is even more.  

They show me this thing called glucagon, which is an emergency treatment for low blood sugar which involves a big needle and some vile of powder that you mix up.  (I'm sure there's a little more to this, but I wasn't retaining all the information so well at this point.)

So, here we were.  We were stacked up with like 10 different books, and then long acting insulin, a glucagon thing, new insulin pens, syringes for the long acting insulin, needle tops for the new pens, alcohol wipes for the long acting insulin, blood sugar monitor strips, blood sugar monitors, lancits for the meters, ketone strips, and probably a whole lot more that I can't remember or I hope I didn't forget!  

Luckily the strep and flu tests finally came back negative and he was allowed to go to the playroom for a short half hour.  And, he could get rid of that mask!  

By 5 pm, we were all packed up and ready to venture out into the real world.  It was a relief, but actually it was quite frightening knowing we would now be on our own.  Luckily, our son is one of the smartest people we know.  If we didn't get it, we know for sure that he quietly took in every single detail of Diabetes.  Between the 3 of us, we could get through this.  

Finger Pokes and Injections with Juvenile Diabetes

Here is where we get to talk about the actual poking with Type 1 Diabetes.  Maybe your only experience with Diabetes is seeing someone give themselves a shot or seeing someone poke their finger to check blood sugar, but here we will go into all the details.  

Our son had to poke his finger before every meal to check his blood sugar, or if he was feeling overly low or high at times (of course we weren't really sure of what this felt like to recognize it just yet).  Now awful as it was, to make it worse, our son played the guitar.  He didn't just strum chords, but he liked to play finger picking guitar songs.  This meant he was going to be poking his fingers all day and yet still have to use those sore fingers to play the guitar?  

I remember seeing some commercial about a professional guitarist who had Diabetes who was helping to advertise about a blood sugar monitor that let you poke your arm or thigh or somewhere else to check blood, but I didn't know if our son could do this.  When I asked, they said it is possible to check other places, but "we  won't be teaching you that now".  So gee.  Maybe he could poke other places, but we weren't allowed to know yet?  Our son was brave though, and he chose a different finger each time.  I asked him which finger he used least in playing guitar and so maybe he would choose that finger more.  

Now, the actual injection details.  With insulin injections, there are only so many areas that you can inject, and these need to be rotated as to not cause problems.  Here is a picture as to wear you can inject:

As you can see, the areas to rotate injections are the upper arms (mostly in back), the abdomen, the hips or buttocks, and the thighs.  I think this picture doesn't show the buttocks part highlighted, but oh well.  

So, with each meal, and at bedtime when he needed a long acting insulin, he would have to choose which sight to use and then remember and rotate to the next area next time.  

We were rather lucky I suppose.  While we met many other parents at the hospital for the same reason, their kids were much younger.  Some had kids as young as 4 years old who had developed Diabetes.  This meant they were the ones doing all the injections.  Our son was 12 years old, and he was the one who was learning how to inject himself and check his own blood sugar.  Although we felt lucky, we still felt guilty as putting so much upon a young 12 year old.  He was so brave though.  With every poke and every injection, he never cried and tried not to wince.  I couldn't imagine being poked so much, or worse, I couldn't imagine having to poke myself.  I don't know if I could do it.  

We soon learned something that could pose almost as difficult---us being the ones to inject him.  While we did learn to do his short acting insulin shots and poke his finger for blood sugar check, the main thing we would be responsible for would be the nightly long acting insulin shots.  And this we learned caused him more pain.  How awful it was the first time I had to inject this needle into his abdomen for the long acting insulin.  I felt so bad.  I was hurting my child, on purpose!  They kept telling us at the hospital that we're not hurting but helping, but it is so hard to think about when you are basically stabbing your son with a needle and looking at him trying to be brave when you know that it hurts him!

Right now we were using viles of insulin with separate syringes that we would fill and inject, but they told us that we would be getting insulin "pens" for when we went home to use for the short acting insulin at meals.  Supposedly these pens were easier to use.  

We had all taken turns at the hospital administering the insulin.  I would do one, my husband would do one, then our son.  It all worked out somewhat, but sometimes it would be our son's turn and the rotation site would need to be the back of the arm.  This proved difficult.  

In order to inject, you needed to pinch the area with one hand then poke the needle in, then release the pinched skin, then inject the insulin.  So, how could you do this on the back of the arm when your arms don't bend back there with 2 hands?  Well, the hospital staff showed us ways to use "other objects" to make the skin pinch up.  They said you can use desks, a counter, a wall, or in the hospital they showed him how to use his knee to pinch the skin on his arm to where he could inject with one hand.  We had another kid come in as part of a mentor group who told us that he would squish himself next to the piano at home to do his shots sometimes.  Goodness.  What an adventure we were getting into.

Still in the Hospital with Type 1 Diabetes

Here we were going on Day 3 at the hospital, and it was somewhat depressing.

One thing you can notice by this picture is how extremely skinny he is.  Here he was a 12 year old boy who only weighed 64 pounds.  I'm pretty sure his younger brother and sister only weigh about 8 pounds less.  He was always wearing this thick winter coat all day long, even when he was inside, so he his his weight loss well.  I feel bad I didn't pay enough attention.

Although he wasn't really sick, they required our son to wear a mask or have everyone else wear a mask when entering his room.  He couldn't leave and go to the much talked about kids' playroom, and so he was stuck in his room for almost the whole stay.  They did at times bring him different toys he could play with in which they would sanitize later.  The only reason they were taking this precaution is because when I first brought him in, I thought he may have had strep, and so although the initial test came up negative, they were keeping him confined until a much more detailed test (which obviously must take 2 days to figure out???) came back negative as well.  It's hard enough that you just got diagnosed with T1 Diabetes, but then it's harder when you see all the other kids in the wing running around playing and going to the playroom when you are stuck in your room.

Being in the hospital was also pretty lonely.  While we were lucky to have my dad and step mom and my husband's sister come up to see our son, nobody else came.  We could not believe that our son would stay 3 days in the hospital without any other family coming to see him.  But then again, there were many that just didn't understand.  They didn't realize this was a big thing, and so why did they need to come?  

He did have a great scout troop, that instead of their weekly activity, they all came up to visit him in the hospital.  Now that was awesome.  

While the first day was really sad, as our son took it as sort of a death sentence, and my husband pretty much in freak out mode, by the end of the 2nd day we were somewhat adjusting.  Well, maybe we were adjusting to life in the hospital.  While I was the one in the past who was always first to lose it or have an emotional breakdown, here I was forced to be the strong one telling my boys that everything would be alright.  Who knew what would happen when we got to go home.  Everything was so safe here with doctors and nurses to answer your every question and make sure you were doing things right, but at home we would be on our own.  

I did know that our son wanted to get out of there.  He was in 7th grade, and while it was a break from school, we knew there was a lot of work stacking up that he would have to make up.  Many of the teachers gave him an a break and sort of a pass from all the work he had missed, although he did have a lot of math assignments that he was making up while in the hospital.  

It was Wednesday night, and we were hoping he would get to go home by Thursday at dinnertime.  

We just had to go through a bit more in training, and we all had to have successfully administered a shot of insulin and checked his blood sugar.  

T1 Diabetes; Hyperglycemia vs. Hypoglycemia

So, we had thought that Type 1 Diabetes was basically the same thing as being hyperglycemic, meaning your blood sugar was too high.  This is what it seemed like with our son being first diagnosed.  The whole reason they had sent us to the hospital was because they had found something called "ketones" in his urine which meant there was an extremely high amount of sugar in his blood.  

When we were admitted to the hospital his level was only in the high 200's, which I later learned wasn't half as bad as some of these other kids who had been admitted with numbers in the high 600's.  

We learned that Type 1 Diabetes can show signs of hyperglycemia, when the blood sugar is too high, and signs of hypoglycemia, which is when blood sugar is too low.  

As it turns out, the whole reason they had tested our son for Ketones is because he had shown the signs of hyperglycemia.  Here is a chart below that explains some of the signs:

So, many of these symptoms had been going on for some time.  Our son was really thirsty all the time, but I thought that was good he was drinking more.  He did seem to be snacking an awful lot, but hey, he was a 12 year old boy.  I was hoping he was going to go through a growth spurt.  He was going to the bathroom an awful lot, but hey, he needed to if he was drinking so much.  He did complain of headaches a lot and feeling sick, but it wouldn't last too long, so I didn't get too concerned.  His hands had become EXTREMELY dry, but I thought his school health class had something to do with it putting some chemical on them.  He even complained that he couldn't see the screen at this concert we went to when I could see it just fine.  So, yeah, I suck as a mom.  Here he was with basically every symptom of hyperglycemia, and I didn't know it.  

They taught us that if blood sugar gets too high it can be very dangerous when ketones get in the blood.  This is very bad, and having high amounts of blood sugar can lead to all sorts of problems like nerve damage, kidney failure, and even blindness!  

Thank goodness they had caught it early!  

But now we had to learn about the other side of Diabetes--Hypoglycemia, when blood sugar gets too low.  Here is a chart of the signs of hypoglycemia;

Now, to my knowledge, I had never seen our son with low blood sugar, but then maybe I had and just hadn't realized the symptoms.  Headache can go either way and the fatique or impaired vision can go for both hyper or hypo, so how did I really know?  

And this is where I could mess up.  Yes, if we gave him too little insulin, then his blood sugar might be too high, but we could correct it with a correction dose at the next meal, but what did we do if it was too low?  And how would we know?  This would get into checking blood sugar more often or correcting not with insulin, but with a quick fast acting carb.  Of course the book at the hospital made me laugh, as it suggested giving "tablespoons of brown sugar".  Also, just to be clear, hypoglycemia (low blood sugar) is not just caused by giving too much insulin, but it can also be caused just by not eating enough or regularly, or by too much exercise without the carbs to balance it out.  

More Training Day 2: Correction Doses of Insulin for T1 Diabetes

So, along with having to figure out how much insulin you need per carbs that you eat, there is also something called a "correction dose" that you can give depending on if blood sugar levels are too high.  

We learned that there is a normal blood sugar range that you should have at all times.  These levels depend upon how old you are.  For a child up to age 13, he/she should be between 80 and 150, but for someone age 13 to an adult, they should be between 70 and 150.  

We are supposed to check our son's blood sugar before every meal.  If it is in the target range, then we just need to give him the amount of insulin per his carb ratio, but if it is high, then we give what is called a correction dose.  

The correction dose is usually 1 unit of insulin per every 50 glucose level that is over the target range.  So, if he checks his blood sugar before lunch and it is at 217, then he needs to have the insulin amount to cover his carbs  PLUS 2 more units of insulin to correct the high.  

This was reassuring to me so I didn't feel too worried about not giving him enough insulin at a meal.  If I did, then we could just correct it later.  

But, then came the problem of what if I gave him too much?  We would soon learn about 2 sides of T1 Diabetes; Hypoglycemia and Hyperglycemia.