Friday, June 15, 2012

My T1 Mom Aha! Moment

I started this blog telling our T1 story.  I started with Ben’s dx date in October of 2009, and then left off during his honeymoon in the summer of 2010.   I left that story two posts ago, but I now want to pick it up again.

In the fall of 2010 Ben started 2nd grade.  We started the school year with a visit with the school nurse, Mrs. L, and his new 2nd grade teacher, Mrs. P.  We explained to Mrs. P what T1 is and what we needed to do take care of Ben during the school day.  We also discussed what the signs of hypoglycemia are and what Mrs. P should do if she suspected Ben was having a low.  But in the fall of 2010 that never did happen.  Ben’s honeymoon was ending.  We were no longer fighting lows but instead we were fighting highs. We watched Ben’s blood sugar numbers slowly creep up.

The days of only one shot a day were gone.  Ben needed more insulin.  We moved to a sliding scale to dose his insulin.  We found some success with the new sliding scale but felt it was not enough.  At the CWD conference in July, we met a lot of people who used the pump.  They all seemed to appreciate the flexibility and control that it provided them.  Ben had met several children that used the pump and thought it seemed “cool”.  So when we suggested to him that we would like to talk to our doctor about getting one for him he was thrilled.  At our next doctor’s appointment we asked about using a pump and Dr C agreed that now would be a good time to make the switch.  But before we could do that she gave us a checklist of things we needed to do in preparation. 

For those of you unfamiliar with insulin pumps, here is a quick description of what it does.  I am stealing most of this description from the Medtronic website (  Insulin pump therapy is a method for providing insulin to people (or beautiful, courageous small kids) with diabetes without the need for multiple daily injections.  Patients wear an insulin pump throughout the day (all day and all night).  Insulin is delivered at any typical injection site (stomach, thigh or butt if your Ben because he has no fat anywhere else) through a tube and a small needle.  (This injection site needs to be moved every few days.)  Patients specify an amount of background insulin to be delivered over a 24 hour period (basal rate) to keep glucose levels stable.  After meals, patients then issue a bolus dose of insulin to account for the amount of carbohydrates eaten.

Now to be clear, here is a quick description of what the pump does NOT do.  It does NOT check your blood sugar.  You must still prick and check your blood sugar a minimum of 4 times a day.  (Ben averages around 10 times a day.)  The pump does NOT automatically decide how much insulin to give you.  There are approximately 1 gazillion settings you need to enter into the pump. (That’s not an exaggeration.)  You need to decide how much basal is needed at pretty much every hour of the day.  When it’s time to eat, the pump does NOT decide how much insulin to give you automatically.  You still need to check your blood sugar, enter that in the pump, count carbs, enter that in the pump, and then a bolus dose can be given.

Even though, the pump is not the solution to all T1 problems, it does (most importantly for Ben) eliminate the need to take multiple daily injections!  And Ben was thrilled at the idea of dumping all those syringes.  So our first step for Ben to become a “pumper” was to meet with our nurse educator, Nurse G, and decide which pump we wanted to use.  We reviewed our pump options, Medtronic Minimed, Animas Ping, and the Omnipod.  Nurse G explained that one pump could do this … the other that … and another this.  At least that is what it sounded like to me.  It seemed impossible to decide.  So we decided to leave it up to Ben, which one was he willing to wear.  Nurse G suggested that Ben try wearing the pumps (without any insulin) over the weekend.  She also suggested that Jeff and I wear one too so we could understand how they felt and help Ben make his decision.  I had already planned to run the NH Reach the Beach Relay that weekend with some friends from town.  Since I really had no business even attempting to run this relay and would most likely be in excruciating pain from running 15 miles in two days, we decided I should skip the pump trial run and let Jeff and Ben take on this challenge.  I do not remember exactly why, but we decided to give the Minimed and the Omnipod a weekend try.

I remember this day very clearly, and I remember how brave both Ben and Jeff were.  They both inserted the needles, one in their stomachs for the Minimed and one in their upper arms for the Omnipod.  Ben quickly (before we even left Nurse G’s office that day) decided he did not like the Omnipod.  The pump itself was a little too big for his little seven year old arm and he found it very uncomfortable.  Nurse G suggested he still give it a try over the weekend, which he bravely agreed to do.  But in the end, Ben did not change his mind.  His pump of choice was the Minimed.

With that decision made it was time to start the insurance company paperwork.  Ben’s new pump was delivered in December.  Along with the pump, Medtronic sent a DVD explaining how to use it and all its features.  Our family sat down in the living room watched the DVD and took turns playing with the pump and pushing all its buttons.  The following day a Medtronic rep came by the house and re-explained everything we had learned the night before on the DVD.

Next up was scheduling our “saline start” with our Nurse Educator, Nurse G.  Because it was now December and the holidays were getting in the way, we scheduled our saline start appointment for the beginning of January.  At this appointment we learned how to properly fill the pump with saline (soon to be insulin).  And we worked out what we wanted the basal and bolus settings to be.  Ben wore the pump for a full week with just saline.  We had to change the set ourselves at home.  After our week trial run we went back to see Nurse G.  She decided we were ready for the next big step and we loaded the pump with real-live insulin!  We were all very excited but very, very nervous all at the same time. 

On the way home from the hospital we stopped at Dunkin Donuts and we all had a donut.  We counted the carbs and we entered them in the pump and we watched it click away and give Ben his insulin.  No syringes required!

We thought we had accomplished something … but we were so, so, so from being done.  When we left Nurse G’s office that day she gave us a spreadsheet that we had to fill out every day and at the end of the week we had to email it to her.  Here is an example of one day’s worth of numbers.

Based on these numbers Nurse G would tell us what changes we should make to the pump settings.  This process went on for a few weeks. Whenever we changed a number it was always done in very small increments.  Any dramatic changes would be too risky.  It was a very time consuming and frustrating process.  But in the end it was also an educational process.  After tracking Ben’s numbers and emailing them off to Nurse G, soon I was able to predict what change Nurse G was going to suggest.  I learned to spot the trends that she was looking for.  And learned what adjustments would fix those trends.

At our next doctor’s appointment a couple months later, Ben’s A1C was checked (it was 8.2). The A1C is a blood test that reflects your average blood sugar for the past three months.  Specifically, it measures what percentage of your hemoglobin is coated with sugar.  Dr C explained that typically your A1C goes up during the first months of using a pump as you work out what all your pump settings should be.  Dr C thought Ben’s A1C of 8.2 was really good and she deemed our transition to the pump a success.  She suggested that at our next appointment in three months we would revisit all of his settings.

Now, I was happy with this news, but at the same time I was unsatisfied.  8.2 is not an ideal A1C.  Ultimately, we wanted to be down closer to the 6s.  But Dr C told us to wait and I figured that is what we needed to do.  As the weeks went on I continued to chart Ben’s numbers and I was able to identify consistent times during the day that his numbers were too high.  I wanted to make adjustments to his pump settings but was unsure of myself.  Plus Dr C said to wait.  I struggled.  I hate to see Ben have high numbers!  Then slowly, slowly I started to realize that Dr C was not the one responsible for Ben’s health it was me (and Jeff)!  I just had my first T1 mom Aha! Moment.  

Ben’s diabetes was our problem not Dr C’s problem!  Our doctor and nurse educator’s responsibilities are to guide and teach us.  (Suppose that is why they call our nurse a Diabetes Nurse Educator)  In the end, Ben is our son and his health is our responsibility.  I had been working under the juvenile assumption that on October 26th 2009 when I decided I should take Ben to see the pediatrician I had done my best mom work.  But that was far from true!  When we got the diagnosis I had started to pretty much do whatever the doctors and nurses told us to do.  I had naively assumed that it was now their job to fix Ben.  I had mentally given them all the control.  I suppose during those first months that may have been appropriate since I was so scared and overwhelmed.  But now it was time for me to take that control back!

With my new found super T1 mom power, I meticulously charted Ben’s numbers over the next few days (I even color coded them) and emailed Nurse G with my suggested pump adjustments.  Nurse G agreed.  I made the adjustments.  And within a day we started to see better numbers. 

In the fall of 2010 when we first asked Dr C about using a pump, we had taken our first baby step to becoming responsible and grown up T1 parents.  We learned a lot during those transition months working through Dr C’s checklist.  In the end, Ben became a pumper! And I finally grew up and became a fully empowered T1 Mom!

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