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.  

A Diagnosis of Type 1 Diabetes; What does it mean?

We are at the hospital emergency room because the pediatrician sent us here to have them do a blood test to see if our son has diabetes.  They keep asking us why we are here and I tell them because the pediatrician told us to come.  They ask why we went to the doctor and again and again I'm telling them about how I thought he had strep, but it doesn't matter, the doctor thinks he has diabetes.  

They do a number of blood tests on our son who is handling things very well even when they messed up and had to repoke him a few times.  Then, they even put an iv port in his hand in case they need to give him fluids later, and he handles it like a champ watching every step of the way.  

We are there for hours wondering what is going on and what the results may be.  

In the end, the diagnosis is in.  

"Your son has Type 1 Diabetes."  

"Is that the insulin dependent diabetes?"  I ask.

"Yes."  

Was this real?  How did this happen?  I thought back to all of the tootsie roll wrappers I had found hidden in the back of the pantry and of all the candy bar wrappers I had recently found when doing his laundry.  Oh, is it my fault?  I didn't catch him sneaking so much candy!  

But no, the doctors told me there was no way I could have caused him to get diabetes.  It doesn't work that way.  It actually runs in families.  But in our family, there is no one.  He will be the first.  

OK, but what did this all mean?  What were we supposed to do now?  Could he never eat sugar again?  Was this the end to Halloweens, Christmas and Easter candy?  What happened next?  

The hospital staff said they were going to admit our son for the next 3 days!  I was confused by this, as he still had a bit of a fever, but he wasn't acting sick and definitely not sick enough to be in the hospital for 3 days.  Why did they want to do this?  What was going on?  They said for the next 3 days they needed to start giving him insulin and monitoring him to figure out his levels and do some sort of educational training for us.  How do they give him insulin though?  I imagined them hooking him up to IV bags of insulin that they would be pumping through him for 3 days or something.  This was not the case though.  

Really, we didn't know anything about Type 1 Diabetes.  I remember vaguely some times where a friend commented that they were picking up their husband's insulin, and I remember a coworker saying she had to go do her insulin before she ate a dessert, but I had no clue what all of that was really about.  I assumed there was something to do with injecting insulin, but when and how?  

As we waited to be admitted into the hospital we began learning a little bit about what was to come and what we would be doing for the rest of his life.  

It was taking so long that they were going to let him eat lunch in the ER.  But to do this, he had to have insulin.  I remember ordering the meal on the hospital phone and them asking if we were on a "carb counting" meal plan.  I had no idea what they were talking about, but I guess that was the diabetic meal plan.  It sounded like some sort of exercise/diet plan.  As we soon learned, for every carb he ate, he had to have a certain amount of insulin to cover it.  And this was going to be for every meal he ate, and forever.  I couldn't get that into my head.  There was no cure for this.  This was it.  This was forever.
FOREVER.

We watched as the nurse came and gave him a shot of insulin before he could eat.  A vile of fluid, a long needle, and injection---this was something he was going to have to do 3 times a day and then even more?  It seemed unreal.  This was just a teeny view of what we were to learn, as for the next 3 days we were going to be overwhelmed by how much we needed to know and remember.  

I was still thinking he couldn't have much sugar ever again and how were we going to change everything and deal with everything with the rest of my family and kids.  How did this all happen?  Why?  It didn't run in our family.  How could this be?  How would we handle all of it?  I didn't say much in the ER though.  Here was my brave 12 year old who was the one being poked and injected.  I had to be strong for him and make it seem like everything would be OK.  Really, I was kind of clueless anyway, so I figured it wasn't that bad.  I still didn't understand why we had to be there for 3 whole days.  I would soon find out.  

Missing the Signs and Symptoms of Juvenile Diabetes

I suppose there are many parents out there that may be aware of the signs of type 1 diabetes.  I'm sure there are many people who are familiar with diabetes by having some one in the family or a friend who has dealt with it.  I'm sure there are many out there who would recognize the symptoms right away and get their child checked out by a doctor.  Well, we weren't one of them.  We didn't have a clue.  

The signs and symptoms were all there if we had known any better.  They probably had been going on for several months!  Our son was 11 years old at the time.  He was a pretty healthy kid.  He had a little bit of asthma, but nothing major.  

At the beginning of his first year in Junior High School, he began not feeling well on and off.  He would come home from school not feeling well, but then he'd eat a snack and be fine a half hour later.  He would be fine and go to dance classes, but then complain that toward the end of class he felt a little sick.  We really didn't worry because the bouts of not feeling well were so short and sporadic.  It just seemed a little weird.  He was always fine in the end.  

Another month into the school year we started to notice that his hands were all of the sudden incredibly dry.  So dry in fact that we thought he had been chemically burned from some experiment in health class.  We tried all kinds of lotions and creams for months, but his hands continued to crack and bleed and look burned up to his wrists.  

It seemed as if he was awfully emotional lately.  He would get upset by the littlest of things or angry and frustrated so easily.  But then of course, he did have Asperger's Syndrome, a form of high functioning autism, so maybe it was part of that, or he was reaching puberty, so maybe it was just some extra hormones kicking in.  

At dance classes, we looked to see if he would be moving up to the next levels, and the comments came that he was just so thin.  Others around us all seemed to comment on how skinny he was.  We had realized his thinness, but just assumed he was going through a growth spurt.  We were always trying to get him to eat more to bulk him up a bit.  

So, all these little bits of signs were there, but he seemed like a regular happy kid to us.  

When he turned 12, we noticed that all of the sudden he was up going the bathroom an awful lot at night.  We would send him to bed at 9, but then he would be running up the stairs at 10, midnight, 1 am, 3 am.....it was insane!  At first I thought, "Good grief!  What is this boy drinking at night!?"  Then I thought maybe he had a bladder or urinary tract infection.  It was crazy.  I even googled his symptoms and nothing really came up except for overactive bladder or incontinence.  I was getting rather annoyed that the bathroom was becoming such a mess.  He had such urgency that he was rushing to get to the bathroom and was often missing the bowl.  I was cleaning the toilet and floor almost after every bathroom visit!  

This is when I thought something has got to be up.  It's got to be some sort of bladder infection.  He had an appointment with the doctor in the next week for a check up, and so I thought he hasn't complained about any pain so maybe we'll just get him started on some home remedies like cranberry juice or supplements.  

Then he got sick.  He had a fever and wasn't hungry.  His fever was really high---101.8 degrees.  We gave him some motrin and sent him to bed.  In the morning he was worse.  He complained his throat really hurt and we checked his temperature and it was 103.8!  That was enough for me to want to get him to the doctor right away.  But what we suspected was strep throat.  I made an appointment with his pediatrician and took him in.

The nurses and doctor ask you why you are there.  Our initial reason was the high fever and sore throat, but as long as we were there, I commented on the frequent urination and the redness and rash of his hands and wrists.  Might as well get everything taken care of all in one visit!  They did a strep test, examined his hands, and then had him leave a urine sample.  I figured they would come in to tell us he had strep, but that wasn't the case.  Or maybe he did have a urinary tract infection and that had caused the high fever.  I wasn't so worried about his hands.  I thought they might prescribe some prescription cream or something.  

Well, the doctor came back in and I knew something was up because he closed the door.  Pretty much they leave the doors open when we have been there, or maybe I hadn't paid attention, but it just seemed a little weird at the time.  

No, he didn't have strep (at least the initial test had come up negative), his hands were a problem of washing too much with antibacterial soap (which we would later learn it was more because he was going the bathroom so often he was washing his hands way too much), but then there was the problem of his urine sample.  This was it, I thought.  He's got a bladder infection.  But that is not what the doctor said.  

He began talking about something called Ketones and having sugar in the urine or something.  I'm still thinking he has a bad urinary tract infection, but the doctor is going on about things I'm not familiar with and really not making sense, but then he throws out the word "Diabetes".  I'm very confused at why he would be talking about this.  He says we need to take him up to the children's hospital emergency department right now and that if what he suspected were true, that they would admit our son and he would stay there for the next 3 days!?  What?  How?  I was bringing him in for strep throat.  What was going on?  Panicked as we were, but still confused, and a bit thinking the hospital might think differently, we headed on to the hospital with too much running through our heads.