Sunday, April 8, 2012

Diabetes 101, an introduction to our "New Normal"

After Ben and I had picked up Jeff from school we drove straight to Children's Hospital in Boston.  At least that is what I assume because I do not remember anything about the drive.  I do remember finally reaching the emergency room door and seeing a waiting room full of kids and parents.  At the time the swine flu was spreading and the television news had everyone frightened for their children's lives.  Because of this fear Ben's brothers were not allowed to visit us in the hospital that week.  But our nurse practitioner had called the hospital ahead of our arrival and we were quickly registered and sent to a room to wait for the doctor.

Now from this point to the time we left the hospital four days later all seem like one very, very long day.  The one thing I do remember about this time in the emergency room was how very brave Ben was.  At one point, the nurse had to give Ben an IV.  He had become severely dehydrated and needed fluids.  The nurse did a wonderful job talking Ben thought the process.  And Ben listened attentively and never flinched or cried.

We spent several hours in this room waiting to be emitted.  Some time in the evening Jeff left to check on Garren and Cole and pack up some clothes to bring back in the morning.  Ben and I watched a SpongeBob marathon.  We finally settled into our hospital room around 11:30 pm.  I was exhausted but Ben insisted that we stay up past midnight.  He had never stayed up that late and was excited to tell his friends back at school.  So that's what we did.  To this day, he often asks me, "Mommy remember the night we stayed up all night and watched TV?"  Indeed, I do.

The next morning, after Jeff returned, we began our Diabetes 101 training.  There is legitimately a full course schedule.  We had to sit with our nurse educator for several hours a day reviewing all the information I should have read on webMD. 

We learned that Type 1 diabetes is very different from Type 2.  Type 1 diabetes is an auto-immune disease.  Research suggests that sometime in 2009 Ben got a virus that caused his immune system to go haywire.  His immune system then decided to kill the islet, insulin producing, cells in his pancreas.  His body can now no longer produce insulin.  This means that his body's cells can no longer use the glucose in his blood for energy.  Now that Ben no longer has a working pancreas, Jeff and I will have to take on that job.  This job will be ours until we can hand it off to Ben himself.  Since there is no cure (as of today) this will eventually become Ben's lifetime job.

We learned how important it is to do this job well.  If he does not get enough insulin then his blood sugar will go too high and this could cause a serious problem called diabetic ketoacidosis (or DKA).  This can be deadly.  Over time, it can cause damage to his eyes, heart, nerves, kidneys and blood vessels.  If he gets too much insulin then his blood sugar will go too low and cause hypoglycemia.  This too can be deadly.  When his blood sugar is too low he will feel shaky, irritable and confused.  He needs to eat fast acting carbs quickly, like juice, to avoid going too low which, among others things, could lead to a coma.

Managing Ben's diabetes becomes a very precise balancing act between too much insulin and too little.  This balancing act becomes even more complex because the insulin dosage is not the only factor that affects his blood glucose levels.  Some of the other things to consider are:  what time of day it is (your body requires more insulin in the morning versus mid-afternoon), the amount of exercise he has recently done and what he did 6 hours earlier, where the injection site is, and how much stress he is under.  You have to consider all these factors every time you calculate his insulin dose, which on average is about six times a day.  Then the rest of the day you need to be aware of his activity level so you can determine if you need to supplement his exercise with additional carbs.

This job does not have normal work hours.  There are no lunch breaks, vacation days or sick days.  This job is 24 hours a day, everyday.  When you go on vacation this job comes with you.  When you go to bed at night you need to know Ben's blood glucose number is.  You need to set the alarm so you can check him at 3 am, because Type 1 diabetes does not sleep.  All the bad things that can happen during the day can happen at night too.

Now that we understood what happened to Ben, we had to learn how to take care of him.  We needed to learn how to give his shots (much to my dread).  First we watched the floor nurse measure out the dose.  Then she taps the vile and syringe to remove all the air bubbles.  She tells us this is very important.  Though she never tells us exactly why.  I assume that it would be very dangerous to inject air bubbles into my son's veins.  I figured they could kill him like a deep sea diver who ascends to the the surface too quickly and gets the bends.  Honestly, I didn't realize this wasn't true until almost a year later.  In reality, the air bubbles in the syringe take up space and therefore reduce the amount of insulin you are injecting.  We are now on our second day with our Type 1 diagnosis and obviously I am not handling it any better!

After the nurse taps all the air bubbles out of the syringe she then shows us the exact amount she has drawn.  Then she has to leave the room to find two other nurses who can verify that she has drawn the correct dosage before she gives it to Ben.  We go through this process several times that day.  Watching this process starts to make me feel even more frightened and insecure.  If this trained nurse needs all these professional eyes to double check her work, I ask "How the heck do they expect us to do this on our own?!"

We spend the next days, giving Ben his shots, worrying about the bends and where the closest decompression chamber is, and learning how to count carbs.  Because Children's Hospital is a teaching hospital there was a constant parade of doctors in and out of Ben's room.  When the doctor would come with his group of students they always wanted a parent with the child.  My job was to field most of the questions and help Ben remain comfortable.  I remember watching Ben while he was surrounded by a team of doctors with clipboards, just like an episode from Grey's Anatomy.  Ben had so far been great about the finger pricks, IVs and shots.  But during these group doctor's visits always seemed to be the time I would sense his fear and see the worry on his face.

During one of these visits, the doctor asked how I had known to bring Ben to the doctor.  I then proceeded to tell my story about how I had diagnosed him on webMD.  They all found this story fascinating (or at least that is what my ego thought.)  The doctor did tell me then that we were very lucky to have caught the symptoms so early.  We had avoided DKA and it all could have been a lot worse.  One day I will have to tell Ben this so he can properly thank his brother Cole for noticing his symptoms and worrying and loving him enough to let me know.

Jeff and I have been doing well in our Diabetes 101 training according to our nurse educator.  And now it was time to chose what type of insulin care plan we wanted to use.  We can either calculate insulin dosages and give Ben injections every time he eats or we give him shots at set times during the day and strictly manage his carb intake.  The second option also allows him to go to school and not get shots during the school day.  Jeff and I are sitting next to each other at a long table and across from the nurse educator.  As she lays out these options, Jeff and I start bickering.  I want option 1, more shots with more food flexibility.  Jeff wants option 2, less shots.  I remember this discussion getting a bit heated and the nurse educator was just watching us.  I figure she must have seen this same argument almost daily.  In the end, Jeff stands firm and we go with option 2.

Now one last thing to do.  It was time to fill our prescriptions before we can start getting ready to go home.  The nurse educator gave us a stack of prescriptions which included two types of insulin, syringes, lancets and glucagon.  Luckily, Jeff is the organized one in the family, and gallantly takes the prescriptions to CVS.

One more night in the hospital.  Tomorrow we will go home to our "new normal".  That's the term our nurse educator likes to use to describe what life will be like when we return home.  While Jeff is at the pharmacy filling grocery bags full of medical supplies, I return to Ben's room.  I remember sitting with Ben and holding his hand while he watched TV.  He was watching SpongeBob and I prayed that we would have the strength and knowledge to properly take care of Ben.  I believe over the past two years Jeff and I have done well, but I do often still find the need to take a moment and pray.  I pray for Ben's health, his brothers' health, strength to keep fighting, and hope that some day soon we will finally get use to our "new normal."

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