World Diabetes Day

Let me tell you a story of a sweet, and energetic little boy, who has a laugh that infects you and humor that will catch you off guard coming from a 7 year old.  He is my youngest kid, and up until April of this year, we though he was a pretty healthy little boy with few cares in the world.

William

But there was something very wrong with his body.  Starting around about last December he started to lose weight.  He had, the year before, become a little chubby, but we weren't really worried because he was just 6, and a pretty active little boy and we eat fairly healthy.  Then he started thinning down, and we didn't think much of that either, because we figured he was growing into his weight, and was evening out.  (He was also getting taller).  He also drank a lot of water, which we didn't think anything of because we don't really drink anything else around here, and we were proud of him for drinking so much water.  But then, he started wetting the bed.  We really thought it was from drinking too much water, and couldn't get him to drink less in the evenings, so the power struggle about the bed wetting was in full swing….  He is also a fairly difficult child at times, and we've been trying to get to the bottom of that, so, we thought it could be a defiance issue.   The moods etc had gotten so bad that we elicited the help of Dr. Salek, and began working on starting ABA Therapy.  (I've talked on this before)…

Then, in April he had his tonsils out.  We were hoping this would help the bed wetting, and the sleeping and the mood.  A sleep study indicated that his tonsils could be causing sleep deprivation issues.

As he was healing from that surgery the flu (Influenza B to be exact) came to our school, and ultimately our home.  As we all went down one by one with the flu, we managed to keep William in the clear, since we were worried about his tonsils healing.  But then, after 3 weeks of continuous sickness in our house in one form or another, he got the flu too.  I wasn't worried, though, because by now we were on speed dial with the pediatrician and fast tracked to Tamiflu.  So, I got him started on the Tamiflu and everything seemed to be going as expected- the fever broke by the next day, but he still felt kind of lousy.  That's pretty much what happened to the rest of us too, and it lingered for a couple days after the fever broke.  My husband and I had to go out of town, and since his fever had broken, we decided to go ahead and go, because we figured he'd perk up the next day or so.

But he didn't.

He stayed sick.  And, every day we talked with my oldest daughter and my oldest son and tried to figure out how to help him.  We were pushing fluids real hard.  He still wasn't running a fever, but he was very lethargic.  I started talking with the pediatrician's office and we kept pushing fluids and watching him.   Monday we were driving home and called to check on him again.  The news was not good.  He was still very lethargic.  We were getting pretty worried, so I was talking with the pediatrician's office and made us an appointment for Tuesday at 1:30.  We talked with William and he didn't sound right at all.  We drove as fast as we could to get home, and the 12 hour drive seemed to take days.

When we got home late that night I went to check on him and he was breathing heavily.  I thought the cold symptoms from the flu had settled in his chest, so we started nebulizer treatments through the night until we could get into the doctor the next day.  

By morning he was worse.  Now he was getting more lethargic and his breathing was more of a pant.  As the morning started going I decided we couldn't wait until 1:30 for our appointment, so I called the nurse and told her we were coming in now and we'd wait in the waiting room until they could see us.

When we got there they took us right back.  Because he was breathing so heavy, almost panting they checked his oxygen level.  It was pretty good.  He was kind of disoriented, though.  Like, I'd ask him what a duck says and he didn't know.  If I told him the duck said moo he knew that was wrong, but couldn't think of the right answer.  This was pretty scary.  He was also saying his stomach hurt, but couldn't really describe how.  I'd ask him to elaborate and he just couldn't.  By this time he hadn't really eaten in a few days either.  The doctor said she didn't know what was up, could be residual virus stuff, or could be appendix because of where he was saying his stomach hurt, so she felt we should go downstairs to the emergency department so they could do an ultrasound and better figure out what was going on.

I was able to get him to walk, but I was pretty much directing him because he really wasn't walking straight.  We got to the ER and they called him right back because our pediatrician had called ahead.  As he walked to the nurse he was sort of stumbling and walking like a drunk person.  The nurse asked if they could check his blood sugar and I said sure, while another nurse explained we were there for the flu.  

After several days with very little food, just water and a little bit of gatorade, his sugar was 396.  They immediately took us back to the room and started getting more blood work.

At this point I'm still there for amoxicillin for possibly pneumonia in my brain, and the blood sugar issue is no big deal.  Boy was I wrong.

A few minutes later they hook him up to an IV and explain to me that they need to start bringing his blood sugar down, and that this is probably what's wrong with him.  I call my husband and tell him what is happening, and he asks if he needs to leave work and I tell him no, I don't think it's a big deal.

A few minutes later the nurse comes back in and says, "Ma'am, we're going to have to transfer your son downtown to the medical center.  He needs to go by ambulance because his blood sugar is dangerously high.  And, when he gets there he'll be going to the ICU"….. 

Boy did my heart stop.  When the ambulance arrived a flight nurse walked into the room.  The room around me warped.  I said, I thought we were going by ambulance, not life flight.  He said you are, but I need to be in the back of the ambulance with your son.  I knew this was a really bad sign that they sent a flight nurse on his ambulance.  My husband had just arrived at the ER then too, and I think he may have held me upright because everything around me was becoming blurry.

Into the ambulance we went, and my husband followed behind in the car.  I still really didn't understand what was happening, I was just trying to put one foot in front of the other.  We made it downtown in about 10 minutes with lights and sirens blaring.  As we got into the hospital downtown the flight nurse asked for another blood pressure cuff to make sure his readings were right.  I don't remember the exact readings, but it was something like 180/156.  His blood glucose level had gone almost to 500 on the ambulance as well.  And, my kid was so sick he really wasn't responding to us.  He was now so lethargic that it was scary.  As they poked him and put new IVs in and moved him from ambulance to ICU and did the work up for that he didn't even move.  

Turns out he was in Diabetic Keto Acidosis.  Which basically means the blood sugar level in his body was so high that his organs were starting to shut down.  He was very, very sick.

As a mom, I can tell you that I have enormous amounts of mommy guilt.  I missed all the signs.  They could easily be explained by other factors, so I dismissed them.

When he got the flu that was the final straw for his little body, and it just couldn't compensate anymore.  I'm so thankful I took him to the doctor when I did, though because by 1:30 (our original appointment time) we were already in ICU, and he was in a very deep sleep.  He really wouldn't wake up for almost 48 hours.  And I wouldn't sleep for the same amount of time.

When he finally woke up and was able to eat 2 days later I was relieved, but still very scared inside.  Over night in the ICU unit a kid had come in in the wee hours of the night, and by morning he had passed away.  His mother had a meltdown outside our window.  William slept through the whole thing, but I was forever changed by it.  I knew that I was in danger of the same.  I felt that momma's pain in my heart as I held my little boy's hand as he slept.

Finally we moved to a regular room, where we would stay another 2 days while we got his numbers under control and learned all about what Type 1 Diabetes is.  

Type 1 is an autoimmune disorder, and is NOT caused by being overweight or eating too much sugar.  It is caused by the body attacking the part of the pancreas that produces insulin.  There is not cure for Type 1, only insulin supplementation.  

A minimum of 4 daily shots keep my baby alive.  Without them, he would die.  He is one of the bravest people I know.  He is turning 8 on Saturday and he can tell you how many carbs are in many foods, and prepare a shot and administer it to himself (with supervision of course).  He has a Continuous Glucose Monitor inserted in his arm that we have to change out weekly, and he has to test his blood sugar with a finger prick several times a day.  He does it all with little complaint.  Most of the time he just does what needs to be done and moves on.  He can't eat one morsel of food without first thinking about he insulin response, and most times he eats he has to have a shot first.  This is so much for a little boy to handle, but he does.  And he does it beautifully.

So today, on World Diabetes Day, I just wanted to take a moment to tell our story, and send a shout out to all the  Type 1 warriors out there.  They are amazing in my eyes.  I'm so blessed to be this one's momma.

Love, Semalee

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