Monday, April 23, 2012

The Holidays ... and family photos

Just one month into Ben’s diagnosis and we had already made it through several “firsts.”  We had successfully navigated through our first Halloween and Ben’s first day back at school.  Now it was time to prepare for the remaining holidays, our first Thanksgiving and our first Christmas.

Several months before Ben’s diagnosis we had already made Thanksgiving plans.  One of Jeff’s high school friends had moved with his family to North Carolina.  Jeff had purchased airline tickets for us to fly to North Carolina to spend Thanksgiving with them.  When Jeff purchased these tickets he also purchased the flight insurance.  This was the first and only time Jeff has made that decision, such serendipity.  As Thanksgiving approached we needed to decide if we still would take the trip.  Jeff thought we should still go, but I was certain it was a bad idea.  All I could think of was all the things that could go wrong during the flight.  I was certain that we would get trapped on the plane on the runway with no access to food.  Ben would have a low and I would end up running up and down the aisles like a crazy woman screaming for juice and candy!

To get our money back for the flights we needed a doctor’s note.  At our next doctor’s appointment we discussed the trip with the endocrinologist.  He asked me why I didn’t want to go, and I explained my vision of being trapped on the runway along with a full laundry list of every horrible thing that could possibly happen.  The doctor didn’t argue.   Instead he gave me “the face” and then quickly agreed that we should stay home and signed the paper work for us to get our tickets refunded.

The endocrinologist we meet with that day was Dr. Joseph I. Wolfsdorf.  He was not our regular endocrinologist.  Earlier our doctor had cancelled our appointment because he was unable to make it.  Later the office called us back and asked if we would like to meet with Dr. Wolfsdorf instead.  We agreed not realizing at the time what a privilege that was.  Dr. Wolfsdorf is the Chief of Endocrinology at Children’s Hospital in Boston.  He is world renowned for his expertise in Type 1 diabetes.  We discovered this weeks later.  At the time Jeff and I still really did not understand much about Type 1 diabetes.  The appointment was more like two first graders, who are still learning to add 2 digit numbers, chatting with Albert Einstein.  I wish I could have that hour back now.  I had spent that very luck hour talking to a world renowned endocrinologist about a panic attack I feared I would have on an airplane runway. 

Thanksgiving really is the worst diabetic holiday.  Unlike other holidays, where you go to church, exchange gifts, or watch fireworks, Thanksgiving is completely and totally about food, large quantities of food.  We were now all eating on Ben’s schedule:  breakfast at 7:30, snack at 10:00, lunch at noon, snack at 2:00, dinner at 5:00 and bedtime snack at 8:00.  This was the meal plan we could not deviate from, and we were unsure where a massive Thanksgiving dinner would fit in.

Jeff’s brother and his family had recently bought a new house in a neighboring town.  They were celebrating by hosting a huge Thanksgiving including a house full of family and friends.  It sounded like fun, but sounded like more than we could handle.  Cooking for that many people was enough of a challenge; they did not need our family then making dietary demands.  Instead we decide to go my parent’s for Thanksgiving dinner.  We decided to go to my parent’s house because they were hosting fewer people and I felt comfortable asking my mother to have dinner ready at noon.  That was the theory.  But I forgot that my side of the family is notorious for serving Thanksgiving dinner late, often very late.  And this year was no exception.

We started Thanksgiving Day with the Stow Gobbler 5K run.  This 5K run had slowly become a family tradition.  Two years earlier, my sister had motivated me to run a sprint triathlon.  At the time I had just turned 40 and was feeling very out of shape.  So we started training: swimming, biking and running.  I did successfully complete the triathlon (Note: all I claim here is that the triathlon was completed).  As part of my training our family had started running 5Ks together.  Since we were now committed to living a healthy life style we decided to continue this tradition.

After the run and a quick shower, we drove to my parent’s house.  My sisters were there with their families.  The kids all giggled and played and the rest of us enjoyed a glass of wine and helped my mother prepare dinner.  The plan was to have dinner ready at noon.   I remember pacing back and forth watching the clock.  I kept whining about dinner being late hoping that would help cook the turkey faster.

While we waited for the turkey to cook, my mother wanted to take a picture of all the grandkids.  We arranged them all on the sofa in the living room, Ben was front and center.  While the photos were being snapped there was a cacophony of people yelling at the kids to: “Smile!”, “Sit up straight”, “Look at the camera!”  Joey, my sister’s baby, wanted nothing to do with this madness.  Everyone was encouraging Joey to sit, but he refused and march right out of the photo.  Not only was the baby not cooperating but Ben was not either.  He just sat on the sofa with a strange disconnected look.  Jeff and I knew this was not a good.

I have included the actual photo from that day here.  Ben is in the center with a red and blue stripped shirt.  Joey is the baby running away.

Once the picture chaos was over, we pulled out the test kit and checked Ben’s blood sugar.  Indeed, he was low.  My whining had been unsuccessful and dinner was too late.  We gave Ben his juice and waited for his blood sugar to come back in range.  While we waited, I prepared a plate of whatever food had already been cooked.

Exactly what I had wanted to avoid had happened.

Ben ended up eating Thanksgiving dinner alone.

With Thanksgiving behind us it was time to come up with a plan for Christmas.  We decided the best approach would be to keep it simple.  Fortunately, there is more to Christmas then just one badly timed over-sized family dinner.  We started our day with gifts from Santa under the Christmas tree.  Then we attended Christmas mass.  We returned home around noon and ate a simple diabetic friendly lunch at home.  We then packed presents for our family, snacks, and peanut butter and jelly sandwiches that we would later have for dinner.  Honestly, I do not have a clear a memory of our first Christmas, which I believe is a very good thing!  This Christmas ended free of sad family photographs and any drama.  For us, that was a huge win!

We had made it through two more “firsts”, Thanksgiving and Christmas.  2009 was coming to an end.  It had been a fairly uneventful year until that fateful day at the end of October.  Jeff and I were struggling.  We had so much more to learn.  But we love our boys and we were committed to our family.  We knew we needed more than a New Year’s resolution to get us through 2010.  We needed to think well beyond 2010, we needed to make a lifetime commitment, specifically Ben’s lifetime.

Thursday, April 19, 2012

No More Apologies

A few months ago, during my Sunday afternoon ritual of folding laundry and flipping through the TV channels, I stumbled on to the movie “Steel Magnolias.” It had been years since I have seen this movie, so I decided to watch. The movie had just started and Julia Roberts was getting ready for her wedding. She along with her mother, who was played by Sally Field, went to Dolly Parton’s hair salon to get their hair done. While Julia was sitting in the chair she started to suffer from hypoglycemia. She was sweating, shaking and yelling at her mother. Sally Field quickly gave her some juice and she started to feel better. Then Julia began crying and apologizing to her mother. I felt my stomach in my throat. Oh God! I had completely forgotten that Julia Roberts had Type 1. I watched a few minutes more, and soon found myself in tears too. I then remembered how the movie would end and I knew I could not watch anymore.

To be clear, I switched the channel not because I worry that Ben will suffer a similar fate as Julia Roberts, but because I did not want to ruin my Sunday afternoon ritual with such a sad movie. I am confident that Jeff and I will make an excellent pancreas for Ben. We are luckily armed with better insulin and more advanced technologies than were available to Julia Roberts and Sally Field 30 years ago. Today, there is every reason to believe Ben is going to live a long and healthy life. However, some things have not changed. And today we still find ourselves, occasionally, battling hypoglycemia. Even though I had changed the channel, I was still wiping away tears. The scene in the salon had felt so real. Julia had played that perfectly. Ben and I have played out that scene ourselves, too many times.

The first year after Ben’s diagnosis, his insulin regiment started the day with two shots. One shot is a short-acting insulin which will take care of his breakfast carbs. This insulin is in and out of his body in a couple hours. The second insulin, NPH, is a longer-acting insulin. It will sit in his system and then kick in a few hours later. We give him this insulin at 7:30 am and then it does it is magic around 11:30 am and noon. Now this is how the insulin is supposed to work. But the human body is still full of mysteries and sometimes this insulin works precisely and sometimes it does not. And if this insulin decides to kick in and you have not already eaten your planned carbs, bad things can happen, just like what happened to Julia Roberts in Dolly Parton’s salon chair.

Our first “Steel Magnolias” moment happened soon after Ben had returned to school. I believe it was a Saturday afternoon. I remember being in the kitchen and Ben was watching TV in the family room. I noticed that Ben was not looking well. I asked him if her felt OK. He yelled back at me, “Yes!” Now this seemed to be a bad sign, so I got the test kit and pricked his finger. He was in the low 30s. I told him he needed some sugar and asked if he wanted juice or icing. He then screamed at me and told me he did not want anything! I tried to force him to drink some juice but he refused to open his mouth. I then decided to give the icing a try. I had to force his mouth open and shove frosting in it. I had to force him to keep his mouth shut so he would swallow. Now I had to wait 15 minutes before I could check if this worked. While I was waiting and pacing, Ben continued to cry and scream at me telling me how much he hated me. Once the 15 minutes was up I checked his sugar again. He had only come up into the 40s. I needed him to be about 70, so one more bout with screaming Ben and a tube of frosting.

Eventually, this worked. When I checked the last time I was sitting next to him on the sofa. I knew the number would be OK because he had finally calmed down. The meter read 80, and then Ben started to sob.

He looked up at me through his tears and said, “Mommy, I am sorry.”

I hugged him and said, “No Ben, I am sorry. I am sorry I had to force that icing in your mouth.” I asked, “Do you forgive me?”

He said “Yes.” And then Ben asked “Do you forgive me?”

I said, “Of course!”

I explained that I understood why he acted the way he did and asked if he understood why I had to do what I did. He said he did. Miraculously, even though Ben was only six years old when he was diagnosed he seemed to understand what had happened to him and what we needed to do to take care of him. So I reminded him that this will likely happen again. But when it does there will be no more sorrys! We will do what we need to do and there will be no more apologies needed. Ben sobbed a little more. I held him a little longer.

Then I asked, “No more sorrys?”

Ben agreed, “No more sorrys, mommy.”

Over the past two years we have been through many highs and many lows. Most of them have not been so dramatic. Ben has gotten a lot better at feeling the early signs of hypoglycemia. And when he does we can most often avoid replaying dramatic movie scenes. But when they do happen they most often end with a hug, but never an apology.

Saturday, April 14, 2012

Back to School

Before Ben can go back to school we have to meet with the school nurse about Ben’s care plan.  Our nurse educator at Children’s Hospital gave us stacks of papers with instructions on how to take care of a child with Type 1.  The nurse educator told us we had to meet with the school nurse and make sure she understood Ben’s condition and how we needed her to care for him.  I prayed that we would not really have to teach the school nurse anything.  Because if that was the case, surely we were in trouble!

The day we returned home, Jeff called the school and we made our appointment with the nurse, Mrs. L.  We arrived with stacks of papers and a bag of supplies that we would have to leave with her.  We sat down at yet another long table, Jeff by my side and the Mrs. L across from us, but this time Ben was sitting quietly next to us.  Fortunately, for us, there were already two students, at our very small elementary school, with Type 1, and Mrs. L knew exactly what to do.  (I always feel terribly guilty about that sense of relief I felt once I heard about the other two students.)

Quickly, Mrs. L took charge of the meeting and walked us through the process.  We worked through an official care plan with specific instructions on when Ben would be checked, what to do if his numbers were out of range, and when to call us for more specific instructions.  To this day, I still frequently receive calls from Mrs. L while I am at the office.  My fellow cubes mates have become accustomed to our frequent chats about glucose levels and meal plans.

After we had covered everything I thought we needed, then Mrs. L says we need to discuss what will happen if the school were to have a lockdown.  Oh God!  We had not even considered that!  My first response was, “I will immediately drive to the school, bust down the doors, and find Ben.”  Since both Mrs. L and Jeff thought this did not sound like the best plan, we agreed to come up with another.   Mrs. L explained that she would need to make at least four lockdown bags to be stored around the school.  In them we need to provide snacks with the appropriate carb counts and include instructions on how to take care of Ben if he were to have a low during a lockdown.  This is just the plan that Jodie Foster needed in the movie “Panic Room.”  If you have not seen this movie, Jodie Foster along with her daughter, the young Kristen Stewart, who has Type 1, lock themselves up in a panic room because someone has broken into their home.  Unfortunately for them, they did not know Mrs. L and did not prepare a lockdown bag for their panic room.  As Jodie Foster learned and we were learning, there is an endless amount of planning involved in taking care of a T1 child.  I am so thankful for all the professionals, including Mrs. L, who were guiding us through what seemed to be the world’s largest learning curve.

But we are not done yet.  Mrs. L asks, “What will we do about the bus?”  Good Lord, will this ever end?  Because Ben’s brothers were at a private school out of town, we had already worked out a carpool with another family in town who had sons at the same school.  Because of this carpool, Ben was a “permanent parent pickup” in the afternoon.  Either my friend or myself picked up Ben along with their daughter, Sophia.  For the next few weeks we decided that I would pick up Ben at school.  But what about the morning bus ride?  We decided that Ben would continue to take the bus to school in the morning because it is a short ride, and he will just have eaten his breakfast.  So we decided it was likely safe to take the 20 minute ride to school.

After we were done meeting with Mrs. L we needed to meet with Ben’s 1st grade teacher, Mrs. M.  Mrs. M is full of energy and love.  She was eager to learn what she needed to know so Ben could rejoin her class.  We explained what Type 1 diabetes is and what she needed to do if Ben showed any signs of a high or low blood sugar.  We explained that he needed to eat at precise times during the day.  Mrs. M worked these additional snack times into her school day without complaint.  We let Ben decide if we wanted her to explain his condition to the class.  But he decided No.  However, within a few days Ben felt comfortable enough to have me come into his class and read a book explaining Type 1 to his classmates.  Ben made the transition back to school seamlessly.  And I credit both the ever-loving Mrs. M and Mrs. L for that.

Ben returned to school on Monday, November 2, 2009, only one week after his DX date.  That morning we woke up to our new normal.  Ben first pricks himself and tests his blood sugar.  I plan out a very precise 30 carb breakfast.  I break out my Weight Watchers scale and measure out 32 grams of cereal.  Then I measure out the milk.  At first we found it difficult to plan a meal that would reach our specific carb target.  We always found ourselves just shy of the total.  Jeff figured out that a green grape was exactly 1 carb, so almost every meal, those first weeks, ended with some random number of grapes to make up the carb difference.  I do not remember exactly what Ben had for breakfast for that day, but it is likely to have been a bowl of cereal, ½ cup of milk, and three green grapes.  Once the meal is set, we give him two shots.  First he gets Humalog, a short-acting insulin to cover his breakfast carbs.  Then he gets a longer-acting insulin, NPH, that will cover his afternoon lunch.  I then pack his lunch, again measuring and weighing everything.  I write down his daily meal plan in a log that Ben will give to Mrs. L along with his test kit.  Once Ben has finished his breakfast, and we finish our still daily argument about whether he has drunk all his milk, we pack up his backpack and get ready to walk to the bus stop.

Before Jeff left for school with Garren and Cole he laid out an instruction sheet he wanted me to give to the bus driver.  It explained what needed to be done if Ben needed help on the bus.  With our sheet in hand Ben and I walked out to the bus stop.  We greeted our neighbors and quickly explained where we had been the last week.  I did not have enough energy and focus to go into too much detail, so we just left it with, Ben has Type 1 diabetes.

When the bus pulled around the corner, I looked at Ben, who was all smiles, and then my heart sank.  I was no longer sure I was going to be strong enough to let him go.  But the bus pulled up anyway.  I handed the bus driver our instruction sheet, and explained that Ben now had Type 1 and I needed her to read through this paper so she would know what to do in an emergency.  The bus driver quickly said “OK” and she shut the doors and drove away.  At that very moment I honestly thought I might throw up.  If my two neighbors had not been standing right there I am certain there would at least have been tears.  But instead, I attempted my bravest face, I wished them a good day, and I walked home.

Now begins one of my longest days.  At the time I was working from home.  I logged on to my computer, read some emails, made some phone calls, but mostly watched the clock.  Once the clock hit 2:45 I jumped in the car so I could be the first in the pickup line.  As Ben walked up to the car, I saw that he was smiling, and I smiled too.

Earlier in the day I had sent Mrs. M an email asking her how Ben seemed to be doing in class.  Here is her response:
I laughed out loud.  I may be the very first mother to be so pleased that her son was behaving badly in class.  Poor Aidan H. got his toes stepped on, but I just laughed and laughed.   (Dear Mrs. H, if you ever read this blog, please know I am sorry my son stepped on your son’s toes.)  Our Ben was back.  I knew he was feeling better.  I felt better.  And I thought, maybe, just maybe, we were going to be OK.

Tuesday, April 10, 2012

A Halloween promise

The day we left the hospital was October 29th 2009.  Before we packed all our bags, including two grocery bags full of medical supplies, we had one last visitor.  It was the dietitian.  She brought us a print out with all the carb counts for the most common Halloween candy.  Halloween was just two days away and we needed a plan.  Always having a plan will become part of our "new normal".  She suggested that Ben could have some candy but it needed to be worked into his very strict diet plan.  This was going to be tricky because if he ate 15 carbs of candy we would have to use those carbs as a replacement for others.  This was going to be our first real Type 1 test.

Leaving the hospital felt very similar to when we left the hospital with our first son.  At the time I couldn't believe they were letting us take our baby home.  Didn't they know how scared and unprepared I felt to take care of our brand new baby, who I truly loved with all my heart.  I felt that same fear again, but magnified!  Would Jeff and I be able to manage this disease.  And would we be able to do it without neglecting the needs of our other two sons.  Only time would tell.

From the hospital we went straight home.  I took a long needed shower and then we settled in.  We cleaned out one of our kitchen cabinets and deemed that our diabetes cabinet.  Then I immediately started to plan what Ben's next meal would be.  I searched through the pantry reading all the nutrition labels, quickly realizing I was going to need to rework our typical menus.  Once it was decided what Ben's next snack would be, we waited.  I remember just watching him play with his legos, afraid to take my eyes off  him, looking for some sign of hypoglycemia.

Soon his brothers returned home from school.  They were thrilled to see Ben again.  They had spent four days worrying and not understanding what really had happened.  We sat them down and gave them our own version of Diabetes 101 training.  Luckily, they were both great students.  I explained that this diagnosis was going to change things.  And we, as a family, needed to do whatever we could to help Ben live a long healthy life.  And that included changing what we stock in our pantry.  Both these boys have the biggest hearts and were eager and willing to do their part.  To this day, neither one of them have ever complained about these changes.

At some point we started talking about Halloween.  I had always been the mom that let the boys eat as much candy as they wanted.  We never really set too many restrictions on it.  I always figured that if they ate too much candy they would end up with a belly ache.  And in the end, that would be god's punishment.  But things had changed, and now that Jeff and I had to be Ben's pancreas we needed to be more proactive.   I explained that Ben could have some candy, but I thought the easiest thing to do would be to get rid of the candy the day after.  I suggested that I would trade the candy for a trip to the Target toy section.  I did not want them to feel diabetes had stolen Halloween away.  If may have taken the candy away but it replaced it with something even better.  We call this one of the benefits of being part of the very exclusive T1 club.  (Membership has it's privileges!)  Cole then added that we could give all the candy to his teacher at school because her nephew was serving in Iraq and she was putting together a care package for him.  I thought that plan was brilliant!  So that is what we did.

The night of Halloween, Jeff stayed home to pass out candy and I, armed with my glucagon kit, test kit and juice boxes, walked the neighborhood with the boys.  This was truly a harrowing experience for me.  (I just double checked the meaning of harrowing:  extremely disturbing or distressing; grievous.  And indeed, that is the proper adjective.)  I was constantly worried about the amount of walking Ben was doing and when that level of exercise would cause a low.  And it seemed that every two minutes I would lose sight of Ben, who was running from house to house and loving he was no longer stuck in a hospital bed.  Our neighborhood has no streetlights, so in the pitch dark once you lost sight of him it was difficult to find him again.  Not knowing exactly where he was, I would feel a sense of panic over take me.  I was convinced he had passed out somewhere and was lying in some one's yard in the dark.  Eventually, I would find him.  But then two minutes later I would lose him again and then back comes the panic!  We have gone through three Halloweens now, and honestly, I will be relieved when he finally out grows this holiday.

Towards the end of the night, after I have relocated my lost son for approximately the hundredth time, Ben stops and tells me he is sad.  Lord knows he has a thousand reasons to be sad, but I look into his sweet young face and ask him, "Why?"  He says, "I don't want to give all my candy away.  I want to save some for when the doctor's find a cure for me."  As if my heart weren't already shattered into pieces, my heart breaks a little more, but I promise him, "When that time comes I will buy you bags and bags of candy, so don't worry about that!"  And at that very moment I make a promise to myself to do everything I can to help that day come during Ben's lifetime.  And when that day comes I am going to turn our house into Willy Wonka's Chocolate Factory!  I will hang some lickable wallpaper and build a chocolate river that will flow right through our kitchen.  Ben and his brothers will be able to eat as much candy as they want (without a single finger prick, insulin calculation or needle).  And hopefully god will spare them his punishment, and there will be no belly aches that day!

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."

Tuesday, April 3, 2012

Life Lessons: 1 and 2

When we left the doctor's office, after we first got the official T1 diagnosis, I went straight to my parents' house.  At this point I have no idea what Ben is thinking.  He does not seem nervous or scared.  I, on the other hand, am horrified.  I keep wishing I had read more on webMD the night before.  I still don't understand what was happening.  But I did decide that I must remain calm and not appear scared because I didn't want to worry Ben who appears to still be OK.  When we reach my parents' I asked Ben to wait for me in the car.  I enter the house and immediately fall to the floor.  I sob for approximately ten seconds.  Then I decide I can't do this.  I stood up and announced to my dad, who had answered the door, that Ben had Type 1 diabetes.  I explained we need to go to Children's hospital in Boston right away.  Then I ask if he can take care of Garren and Cole for a few days.  Like any great grandparents, they say yes.  With that taken care of, Ben and I drive to Fenn to pickup Jeff.

At some point after we left the doctor's office I called Jeff.  I can't remember this conversation exactly.  I believe it was as simple as "Ben has Type 1 diabetes and we need to go to the hospital right now."

While I was waiting for Jeff in the school parking lot, the school nurse came by.  She had already heard about Ben and was coming to check on us.  She assured me that there had been many medical advances made in training and hopefully even curing Type 1 diabetes.  She said that she truly believed that a cure would be discovered in Ben's lifetime and we wouldn't have this disease his whole life.  What?  I had not even considered or realized that this diagnosis was forever!  But this piece of hope that she had shared with me I held on to, tightly.  From this point on, every time anyone, doctors, nurses mention that Ben will have to attempt to manage this disease for the rest of his life, I dismiss that thought.  I refuse to think in those terms.  Our family, including Ben, have only talked about Ben having T1 until the doctor's find a cure.  This bit of hope that the school nurse gave us was a huge gift.  I believe in angels.  And I believe that she is one.

I have learned many great lessons during this journey and this was my very first.  A well timed kind word can change someone's life forever.  Maybe this is actually the second lesson.  The first would be if you are going to diagnose your child on webMD then you should read the whole page!

DX date, October 26, 2009

A little over two years ago, in the fall of 2009, my internal mommy voice started nagging me.  It kept insisting "there is something wrong with Ben."  Ben is the youngest of my three boys.  At the time he had just started 1st grade and was 6 years old.  His two older brothers, Garren and Cole, were in 5th and 4th grade.  Since school had started I began to notice that Ben started to look tired.  He had last his baby fat and started to thin out.  He had also seemed to have lost his low-key disposition.  After school I would find him fighting with his brothers.  Not a normal wrestling, he would become crazed and angry.  Granted, his brothers can be very annoying, but they didn't seem to deserve to be attacked.  What I didn't realize at the time was that we were watching Ben slowly starve.  And that voice inside kept nagging me.  But I kept ignoring it because I was still working under the assumption that unless my son was throwing up or had a high fever there was no reason to bring him to the doctor.
The Sunday, October 25th, Cole came to me and said "Mom, there is something wrong with Ben."  Ding, Ding, Ding.  "Really?! What is it?"  Cole told me that he had been watching Ben and he was drinking and peeing too much.  I had not noticed that at all.  My boys had reached the age that I no longer monitored what they were drinking and I never followed them into the bathroom.  Quickly, I was on webMD typing in these symptoms.  The site presented me with three possibilities:  dehydration, sickle cell anemia, and type 1 diabetes.  After doing a quick read through these I figured it had to be Type 1 Diabetes.  Funny thing is that even though I had found my son's diagnosis I didn't continue to read and understand what having Type 1 really means.

Like any other worried mother, I went straight to my husband, Jeff, and announced "Ben has Type 1 Diabetes!"  And like any other husband of a crazed wife, Jeff told me to get off the computer and Ben would be fine.  So that's exactly what I did.  It's amazing what power fear and denial have over us.  All the evidence was right there in front of me, but I shut my laptop and went to bed.

But denial can only work so long.  Monday morning when I woke Ben up to get ready for school I found he had wet his bed.  Now, this was no ordinary bed wetting, the spot was larger then Ben himself.  I quickly got Ben up and bathed him.  Then I let our normal morning rhythm take over.  We got breakfast ready, packed his lunch and sent him to school.  Again denial working it's magic.

As I was driving to work, my internal mom voice had finally stopped nagging me and instead started screaming, "Call the doctor!  Call the doctor!"  So I did.  I then turned around, picked Ben up at school and went to the doctor, finally.

After describing his symptoms to the nurse practitioner, I still assumed she would just end up telling me "Your son is fine.  He has just hit a growth spurt."  But thankfully, she was more thorough then that and they took a urine sample.  Ben and I sat and waited, expecting to be sent home soon.  Instead the nurse practitioner returned and gave me the face.  I'll never forget that look.  My stomach sank and I knew bad news has coming.  She said, "Your son has Type 1 Diabetes."  My response, "OK."  She then commented on how well I was taking the news.  I had explained that I had been on webMD the night before and had already diagnosed him.  I, of course, felt vindicated that I had been right the night before.  Maybe I had a future as a doctor or a medical professional.  Little did I know that that was exactly what was in my future.  I was about to become Ben's doctor, nurse, dietitian and pharmacist!

But I was no where near ready, I was still expecting her to tell me that we had to change his diet and that he couldn't eat sweets anymore, and to come back to the office in a couple weeks for a check up.  Instead she said "You need to take him to the emergency room." Oh? "And you will be there for awhile so you need to make arrangements for your other boys." Oh?  "And you need to do this right now." Oh?! "They need to start giving your son insulin as soon as possible and you will need to learn how to take care of him." What?!  Now my head was spinning and just a few minutes before I was feeling so smart.

I asked which hospital we should go to.  She gave me a list including Mass General and Children's Hospital.  She said all of them would be good.  At this point my confidence it totally gone.  I had no idea what to do next.  So I asked which was the best hospital.  Again she explained that they were all good hospitals.  Ok, that's just not helping me.  "But if this were your son, where would you go?"  Eventually, she said she would go to Children's.  "OK then, that's where we will go."

October 26, 2009 had now become our DX date.  In the T1 circles you are often asked "What is your DX date?"  The first time I heard this question it struck me as funny and a little silly.  However, now that two years have gone by and we have made it through two D-anniversaries, I understand.  It's the date that life as you once understood it ends.  The door to that life gets slammed shut right behind you.  Then the door to your "new normal" opens.  And you along with your T1 child and the rest of your family gets shoved right through it.  Our nurse practitioner had just closed one door and opened another.  But she didn't shove us through it, Children's Hospital did.