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.

Day 2 Training at the Hospital; Covering Carbs with T1 Diabetes

Although finding out that our son had Type 1 Diabetes was devastating, part of was actually a relief in that it was Type 1 and not Type 2.  Now, I know that sounds awful, but he was a 12 year old kid, and with Type 1 Diabetes you have to watch more what you eat, with Type 2 Diabetes you can eat really whatever you want as long as you cover the carbs with insulin.  OK, maybe it was a bit selfish on my part, but when he was first diagnosed and I didn't know what it meant, I was so worried that I wouldn't be able to make him the right foods or that I would have to figure out totally different meals so he could eat.  I'm really not a great cook, and I don't have too many things that I even know how to cook, and so the idea of having to find all new meals and recipes to make terrified me!  

Even the night our son was diagnosed, my husband still didn't understand, and so he was freaking out our other kids telling them that they couldn't have much sugar ever again, and he even made the 9 year old cry by telling him that we probably wouldn't be having what we call "breakfast for dinner" ever again because of the large amounts of sugar in syrup.  (I guess pancakes and syrup are pretty important to little brother.)

Anyway, we soon learned that while it was a good idea to eat a nutritious diet, having Type 1 Diabetes did not mean you had to go on a low sugar diet or stop eating the things that you normally eat.  This gave me some sort of hope.  Now to deal with the next issue.  How to know how much insulin to give and when?

With Type 1 Diabetes, it is a matter of covering the carbs.  It depends on how much carbohydrates you eat to figure out how much insulin you will need.  With insulin, it is measured in units, and it also depends on what they call a insulin to carb ratio.  This was all part of him being in the hospital.  While he was there, they were monitoring his blood sugar and figuring out how his body reacted to the insulin, so then they could decide on an appropriate insulin:carb ratio.  

So, right now, our son was given the ratio of 1:25.  This meant that for every 25 carbs he ate, he would need 1 unit of insulin.  OK, so great, but how did we figure out the carbs?  

At the hospital it was pretty easy as they had this menu specific for diabetics and it told you all the carbs next to the item so you would know when you ordered it.  That was great here, but what about when we got home?  I understood how you could look on the side of packaged foods to find the carbs, but what about foods that didn't have a box, or would we never be able to eat at someone else's house again or go out to eat?  And what if I didn't do it right?  What if I figured it wrong and gave him the wrong amount of insulin?  This was a lot of responsibility, and this was just a small part.  I hadn't even started stressing about how I was going to have to learn to give him the shots or poke him for his blood sugar as the hospital told us we would all have to learn to do.  

Slowly, but surely, we began learning about carbs and how we needed to be careful by not only looking at the side of a packaged food product for the carbs, but for how much of the food equaled to one serving.  We learned that a lot of foods are calculated by weight or volume, so we would have to start measuring his foods to figure out the carbs.  

The hospital was great and gave us a lot of resources.  (Of course all of them did not come cheap!)  They gave us so many books on diabetes and then we got several that included carb counting charts and information on how many carbs are in most of the common food people eat.  We even got a nutritional guide to all the fast food places and restaurants so that if we wanted to eat out we would know exactly what carbs were in all the foods.  

There was some confusion though.  We did notice that the charts didn't always match up.  While one book said a banana was 17 carbs, another one said it was 27.  Or some would say this much for a "small" apple or "medium" whatever, and it would leave you wondering what really was considered small, medium, or large?  

This all seemed worrisome to me if I messed up then I would be giving him too much or too little insulin and what would happen, but we were soon to learn there was a whole other thing to consider when deciding how much insulin to give, and there was another part of insulin called "correction" insulin that we were going to learn about.  

Day 1 Training; The Difference Between Type 1 and Type 2 Diabetes

We had just been admitted to the children's hospital for 3 days of monitoring and educational training on how to take care of our son with Type 1 Juvenile Diabetes.  Here we were really still in shock, but also clueless to what it all entailed.  So far we saw that our son had to have some sort of shot before he was able to eat his dinner, but we didn't really understand how it worked, and we didn't know that this was going to be a daily thing or how often.  

The first thing we learned was that Type 1 Diabetes was not Type 2 Diabetes.  

When our son was first diagnosed with Type 1 Diabetes, we had so many family members and friends react as if it was no big deal at all.  They figured that Type 1 Diabetes was just not being able to eat that much sugar and having to watch your diet.  They told us not to worry, that it wasn't a big deal and that "they had pills for that".  

Well, they were wrong.  While with Type 2 Diabetes, you may be able to just watch what you eat or take pills, Type 1 Diabetes is different.  In Type 1 Diabetes, your body does not make the right amount of insulin to break down the carbs or sugar in your body.  This is where your pancreas eventually stops producing any insulin at all.  You can't fix it with pills, and you can't just watch what you eat.  You have to take insulin by injections every day and several times a day to help your body break down the sugar or carbs.

It is interesting, as most people are familiar with Type 2 Diabetes, hearing about it from their parents or grandparents who develop it as they get older or after gaining weight, but Juvenile Diabetes is not caused by diet or age or not enough exercise.  It is not something you can prevent.  Sometimes it is hereditary, but sometimes it is not like in our case.  No one in our family has had Type 1 Diabetes.  

Many people told us it wouldn't be that bad because one shot a day isn't a big deal, but it isn't just 1 shot a day.  People with type 1 Diabetes have to give themselves an injection at every meal.  Or, they may have to have more depending if they are going to have a large snack or eat in between meals.  

Also, there are 2 kinds of insulin.  There is a fast acting insulin which must be taken before every meal, but there is also a long acting insulin which must be taken every night to help regulate the level of blood sugar during the day so it doesn't get too low or too high.  

So, really, if you put this all together, then that meant that our son was going to have at least 4 shots a day if not more.  Not only that, but he was going to have to poke himself at least 4 times a day with a needle just to check his blood sugar.  I couldn't stand the thought.  Maybe I'm just a baby, but the finger poke thing at the doctor where they check your iron has always been 10 times more painful to me than if they just took blood out of my arm.  I couldn't imagine my son having to poke his fingers 4 times a day, and from what I had seen so far, it wasn't a matter of just poking.  After poking sometimes the blood wouldn't come out, so there would be a matter of squeezing and pushing, trying to get enough blood to come out to put on the meter.  How awful!

So, yes, while I do feel bad for those out there who have Type 2 Diabetes, I don't feel so bad as for those with Type 1 Diabetes it is a whole other ballgame.  

3 Day Hospital Stay for Juvenile Diabetes?

Our 12 year old son had just been diagnosed with Type 1 Diabetes, also referred to as Juvenile Onset Diabetes.  We were still in shock when they told us that they were going to admit him for 3 days in the children's hospital.  3 days?  What for?  

As we were taken upstairs from the ER and checked into his room, they began setting up the schedule we would have for the next 3 days.  He was to be in the hospital for 3 days so they could monitor his blood sugar levels and be able to prescribe the right amounts of insulin he would need, and also so that we could all go through 3 days of training on how to care for our son with T1 Diabetes.  This would involve a class by a dietitian to go over diet and how to figure out how much insulin is needed per meal, a meeting with a social worker, meeting with a pharmacy technician, and then several training sessions with a nurse to learn about the physiology of Diabetes and how to handle low and high blood sugar.  

Also upon check-in, they told us that both parents would need to be there the entire time to learn everything and practice injecting insulin.  This was going to be a challenge with a dad working full time, and a mom with 3 other kids from age 2-9 who had school and other activities.  We really weren't sure how we were going to make it work.  My husband wasn't even there yet.  Our other kids were getting out of school, and we didn't have any clothes or supplies ready for a 3 day hospital stay.  

We still really didn't have a clue of how Diabetes would play a big part of everyday life.  I didn't know anything.  I thought you would just need to take insulin shots every day, or maybe before every meal, but I didn't know you needed to know an exact amount depending on how much food or what kinds of food you ate.  I didn't understand how you got Diabetes.  I didn't know there was so much to learn.

There really was no preparation for all of this.  We didn't have too much family support.  While we had some family that lived close by, my dad had just had shoulder surgery and was pretty sick still, and my husband's family didn't seem to think it was a big deal, so he had our good neighbors watch all our other children so he could come meet us at the hospital.  The plans were to have him sleep overnight while I took care of the other kids at home, then in the morning after they were off to school, I would come up to the hospital with our youngest as well.  Although the hospital really wanted both of us there the whole time, we didn't have much choice but to trade off every few hours so one of us could be there to pick up kids from school or handle other family responsibilities.  We couldn't really have all 4 of our kids in the hospital room, and we could't leave them home alone---it was usually our 12 year old who would act as the babysitter and now here he was in the hospital.