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
Senators,
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.
