written by his mother, Heather
photographed by Kaile Meyers Photography
At the end of July/beginning of August 2011, Gage began to drink a lot more water and soak through most of his diapers. It started out slowly and progressively got worse. I called his pediatrician every couple of days about these symptoms and she would tell me to keep on eye on him and let her know if his symptoms worsened. I had heard of juvenile diabetes but honestly didn't know someone so young could get it. I wasn't even sure what juvenile diabetes meant.
Over the next two weeks Gage kept
getting worse. He became very lethargic, would panic if he didn't have a sippy
cup near him, would soak through every diaper, lost 4 pounds, and began to have
this very odd odor to his breath - every classic sign of Type 1 diabetes.
I was at a co-worker’s son's birthday
party on August 21, 2011, and trying to get Gage to eat something. I didn't
care what he ate; I just needed him to eat something. At one point, Gage stood
in the middle of the party and wouldn't move any further. He just stood there,
staring off into space. That moment is seared into my brain - the lost look on
my baby's face.
That night my husband, Gage and I were
sitting at the dining room table eating dinner when I looked at Gage and made
the decision to drive into Anchorage from Wasilla to go to the emergency room to
find out what was wrong. I had it in my head that it was a really bad virus or
infection and we would get an antibiotic and Gage would begin to get better. My
husband tried to get me to wait until morning because by then it was 7:30 in
the evening and I had had enough. There was something seriously wrong with Gage
and I needed to get him help.
I drove into Anchorage and we were taken
to a room in the ER almost immediately. The doctor wanted to run some blood
tests and decided to put an IV in just in case some of the tests came back
with something and they would need to give Gage medicine. Gage was in his
stroller and barely moved when they put an IV in his arm. I was sitting there
twiddling my thumbs, waiting for some answers, when this nurse burst into the
room, grabbed Gage's stroller and started wheeling him out of the room. I
grabbed our stuff and ran after her asking what was wrong and where she was
taking my son. She told me that he had Type 1 diabetes and was very sick and he
needed to get to the NICU as soon as possible so they could begin giving him
insulin. At this point Gage was in severe Diabetic Ketoacidocis (DKA) and
almost comatose. He was 21 months old.
Diabetic Ketoacidosis is a
life-threatening condition that develops when cells in the body are unable to
get the sugar (glucose) they need for energy because there is not enough
insulin. When the sugar cannot get into the cells, it stays in the blood.
I was very scared and had no idea what
this Type 1 diabetes diagnosis meant. They admitted Gage to the NICU and began
multiple IV infusions of insulin and saline. His Blood Glucose (BG) was
670 and he was in severe DKA. They had a nurse in his room for a full 24 hours.
I asked why the nurse was staying in his room. She told me it was that he was
not doing well and they wanted someone on hand in case things turned for the
worse. It was almost 24 hours before Gage became responsive and would open his
eyes. If I had waited till morning I believe I would have lost him.
The next three days were a blur of
needles, information, people, supplies, finger pokes and more information. ANMC
had just hired a pediatric endocrinologist and she happened to be touring the
hospital before she started working and Gage was her very first patient. We are
extremely lucky to have Dr. Lescher as our partner in this very confusing and
scary journey.
I brought Gage home after three days in
the NICU and began our new life with Type 1 diabetes. He has always been very
good at letting me check his numbers and give him his insulin shots. I think he
understood that, although he didn't like getting so many shots, they ultimately
made him feel better. We were also very lucky that Gage was able to feel most
of his lows and I was able to treat him before they got too bad. He has had five
diabetic seizures due to lows, all while he was sleeping, so for a little over
a year he slept in my room so that I would be more likely to hear him if
something were to go wrong. After his fifth seizure I talked to Dr. Lescher and
we began the process of getting Gage a continuous glucose monitor. That device
has saved us from a lot of lows and a lot of dangerous high numbers. The first
night Gage had it on the CGM alerted me to four different possible lows so that
I could treat him.
It has been a little over five years
since Gage's diagnosis and he is a growing, thriving, smart young first grader who
doesn't let diabetes stop him from doing anything. He started using an insulin
pump in
August and tells people he is part robot
with his pump and CGM. He is very proud of both of his devices. I tell him all
the time that diabetes does not make him different. It makes him special. I
refuse to let diabetes rob my child of living as normal of a life as I can let
him. He is a hero to his family and we are all very proud of this young boy who
deals with a horrible disease but doesn't let it stop him from being who he is.
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