Tuesday, March 17, 2015

To the Arkansas Senate Education Committee:

I was signed in yesterday, room 207 in our state Capitol building, ready to speak against House Bill 1395 (which the ADA is trying to pass in all fifty states..allowing for "care givers" rather than nurses).  We waited for hours for them to convene.  After the room filled with proponents both for and against..the meeting was cancelled and rescheduled for Wednesday.  This has been going on since last week.  If I can't make the three hour drive to return tomorrow morning, here is my letter to the senators:

Senate Education Committee
Little Rock, AR

I was disappointed that Monday’s meeting was cancelled; I was very much looking forward to speaking to you in person. 

After teaching public elementary school, I now stay home with my four children: ages 14, 12, 8, and 2.  My oldest two children both have Type 1 Diabetes.  Clay was diagnosed at age 12, and he is now 14.  Mary Claire was diagnosed at age 2, and she is now 12.  Type 1 Diabetes is an auto-immune disease where the body attacks itself.  All of the islet cells in the pancreas are killed, and the pancreas will never function again.  (This is different than Type 2 diabetes where a decreased level of insulin is made, but it is inefficient at its job.  It can often be cured with a healthy diet, exercise, and weight loss.)  There is NO CURE for Type 1 Diabetes.  Not only does this mean the kids can have very high blood sugars if they don’t have enough insulin, they can also go very low with even the slightest bit too much.  It’s a very fragile balance.  They could die in hours with a very low blood sugar, and within days or weeks with high blood sugar.  Their bodies CAN NOT regulate their blood sugar alone.

Both children wear insulin pumps.  These are small computers connected to their bodies via tubing that goes under their skin and into a site on their body that gets changed every three days.  The computers can give insulin, but we have to tell the pumps what to do.  We tell it how to give basal insulin (a low level that fluctuates levels approximately seven times a day) based on how their blood sugars are running each day, and we tell it what to give each time they eat or have high blood sugars.  We count the carbs they are eating for a snack, lunch, party or special lesson, and tell the pump what bolus to give (a bolus is a larger amount of insulin).  None of this is automated.

My kids are within ten pounds of each other, but still do not receive the same amount of insulin for their basal or for their bolus ratios.  And these need to be changed or need to be set at temporary levels every few weeks if they gain weight, have extra exercise (like when track season begin), or for hormonal days right before my daughter’s period.  The bolus ratios change five times a day since we use more insulin in the morning to break down our food for energy than we require as the day goes on.  There isn’t one time in the day that they receive the same amount of insulin.  It’s like having two children that might as well have two diseases because they are so different.

We also have to adjust the amount of insulin they receive based on their current blood sugar (reduce a bolus for a low blood sugar reading, and increase it based on a high blood sugar).  We adjust if they are going to have an active day at recess or physical education.  If we expect activity at p.e., but they have a quiz (sitting down), we have to increase their basal to cover an anticipated high blood sugar afterward.  If they aren’t hungry at lunch, or only want half their lunch, we recount the carbohydrates they will consume, refigure their bolus (and how much they get immediately and how much they receive over time based on the fat and protein in their lunch).  The pump cannot be psychic, read our minds or see them eating.  The nurse or I have to do the math with a calculator, and make an educated guess about how they will respond based on their anticipated activity, the food consumed (and its contents), and how they feel.

These educated guesses have taken me years of training, trial and error to determine.  There are even foods that affect my kids differently than other kids.  If they have chocolate, we have to bolus for 1.5 times what they’d normally receive.  They either metabolize it differently than others, or the carbohydrates are labeled incorrectly on packaging.  We have to take into account how old the pump site is (it can degrade after two days), how old the insulin is (whether they refill from a 1000 unit vial vs. using a new 250 unit insulin pen each time to load the reservoir when we change their site), if they have bubbles in the tubing to their body (delivering air instead of insulin), the current IOB (insulin on board: it can work for up to four hours causing a delayed drop), stress (stress can release adrenaline, a hormone that blocks insulin absorption keeping you at-the-ready with energy for a fight or flight action), fighting an illness (the body runs higher if it’s fighting a virus or bacterial infection) or recent exercise (even the kids’ Halloween Book Character Parade around the school always made them go low..it’s out of their regular anticipated routine).

It is only with years of experience that a nurse or I can estimate and take all of these various factors into consideration.  There is value to assessing rather than just following a doctor’s directive.  It is not possible to train a layperson to be prepared for any and all of these circumstances-daily.  I didn’t feel like I had mastered taking care of my child until the fourth or fifth year.  I still called for assistance, sought experts, and read any informational books I could find.  And I had a vested interest.  This was after caring for her 24 hours a day, seven days a week.  A registered nurse with experience is absolutely required, and I can’t imagine how our government and school systems could leave their care to an unequipped adult, especially those with training and jobs of their own-in other areas.  As a teacher, you do not plan to see blood (to check blood sugar) and urine (to check ketones) daily and have lives depend on your every decision.  As a teacher, you would anticipate these to be incredibly rare occurrences and lead to traumatic results.

Insulin is both a necessary and a dangerous drug.  It can very easily be given incorrectly.  A misread .5 (five tenths of a unit) given as 5 units could very quickly kill a fifty-pound kindergartner.  And children would not realize that they are being given the incorrect dosage, as they are not involved or knowledgeable about their care.  They trust their nurse.  If you do not respect the capability of this medication, you could change a family’s life forever.

Kids with Type 1 Diabetes need to test their blood sugar before and after standardized testing.  If they are low, words are jumpy, and they can’t focus or concentrate.  If they are high, they have headaches, excessive thirst and urination, irritability, and a very short attention span.  Lows and highs make for horrible test scores.

My daughter was extremely nervous about PARCC testing today.  When her adrenaline runs high, her blood sugars are also very high.  Any time she or my son have tryouts, a test, Solo & Ensemble contest or a band concert, they begin to run high the day before as they get anxious.  On Friday, my daughter had to be checked at school at 9am, 11am, and 1pm because she was running so high (even after a temporary basal of 160% her normal rate).  After she performed, the adrenaline left, and she crashed to 43 (extremely low blood sugar..normal is 95-100).  This is all normal with Type 1 Diabetes.  When I can’t be present, a school nurse is vital.  I would NOT trust my child in the hands of a “volunteer” to “keep an eye on her”.

When a child has low blood sugar, all of the energy left in their body goes to keep their heart and lungs functioning.  The brain is left at an incredibly low level of function.  My daughter cannot walk, runs into walls, and when given a juice box to elevate her blood sugar, does not know to put the straw to her lips and suck.  She has banged the box on her chin.  They do not play around.  They have almost no brain activity.  When at school, they need to be escorted to the nurse’s office immediately and treated.  They can’t find their way, and have no idea how to help themselves.  This is often why even adults with Type 1 Diabetes die of low blood sugar.

Even as children grow and are more familiar with their pumps and diabetes care..they don’t always choose to take care of themselves or be truthful about their blood sugar numbers.  My son is nervous to tell me (or his nurse) when he’s high (both because he can’t eat over 240 and because he often feels like he did something wrong to be that high).  My daughter has made up higher numbers than what she was (167 instead of 67) to avoid treating before going to lunch with all her friends waiting in the hallway for her.  Both kids are old enough, but I’d say it almost gets worse as they get older.  It’s the age: pretending you are like everyone else.  That diabetes doesn’t exist and wishing it didn’t.  If their nurses didn’t know them as well as they do (like having the same nurse for six years in elementary school!), it would be missed or overlooked.  The strangely perfect numbers for weeks in a row (virtually unheard of), skipping blood sugar checks, not getting insulin, dehydration from a high-our nurses are the guards.

As an educator, I’ve had ill students lay their heads down on their desks.  I allowed them to rest if they were exhausted or felt terrible.  We don’t all have good days.  If one of my students was low and laid their head down on their desk, had low blood sugar and died, I’d feel horribly responsible.  The child’s parents would seek someone to blame.  I’d be sued, along with the school district and the state, and rightfully so.  Not only would I lose my job and my income, I’d feel responsible every day I lived.

Please don’t wait until there is a death (whether from a low on a playground or from an unmonitored high school student) to invest and stand behind our school nurses.  They are not disposable or replaceable.  One lawsuit alone to the school district and state would easily fund their salaries.  Please make the life-saving choice responsibly.


Joanne said...

Wonderful letter... I hope you get to deliver it in person and they hear and understand every important word in there.

It boggles my mind how in some states kids with t1 are left to basically fend for themselves. Texas is one of the best states in protecting our kids (although I have heard some horror stories on schools not following the laws). I feel lucky that our school district is not only open to working with us, but will sometimes even take the initiative. It should be this way for all CWD.

Good for you for advocating!

Holly said...

Joanne, thank you so much! I think my husband might be able to watch the baby tomorrow..and I could leave at 6am. We're trying to make it happen. For all our kids.

Happy for you and Texas, sounds wonderful! Hugs!

Unknown said...

Great Letter Holly! Good luck