On March 25, 2014, our lives were
changed forever. My princess was diagnosed with Type 1 Diabetes, she
was only 4 years old. I had noticed that she was drinking a lot more
and using the bathroom more than usual. She was also always tired
and complaining of being cold. She had a yeast infection that had
suddenly shown up and wasn't going away with any over-the-counter
products. I knew the signs of diabetes and was very worried. I
started doing research on the internet and all of the symptoms fit.
I decided I needed to take her in to the doctor. I couldn't sleep
the night before I called the doctor's office, because I was so
worried. I kept hoping that it was just a UTI, but deep down I had
the feeling it was diabetes. The morning of the 25th, I called her
pediatrician and made an appointment for her later that morning. The
doctor came in and we talked about what I was seeing and my concerns.
He said the odds weren't very high that it was diabetes, but he
would run tests just in case. We were both really hoping it was just
a UTI. He had me take her over to the lab and wait for the results.
I took them back to the doctor and they had us wait in a room until
he was able to read them. A few minutes later, he walked into the
room. He sat down on the stool and asked me why I had asked if she
could have diabetes. My heart dropped! He told me that her urine
showed high levels of glucose (sugar) and they would need to do a
finger poke to test her blood sugar. He said that he was very sorry,
but that she has Type 1 Diabetes. I just wanted to break down and
cry, but didn't allow myself to do it because I didn't want to scare
my daughter. I stayed strong and quickly wiped the tears from my
eyes and cheeks, she was sitting in my lap so wasn't able to see
them. He gave me a hug and said she would be fine. A nurse came in
with the meter to test her blood and also gave me a big hug.
Princess was great about holding her hand out for the nurse, not
realizing exactly what was going to happen. She burst into tears
after the poke. Her blood sugar tested at 333 (normal is under 120
two hours after eating). While they tested her blood, the doctor got
on the phone with Primary Children's Hospital and told them to expect
us. He then came back and said we needed to be at the ER within the
hour. He said it would be best for us to head straight up there, but
we could stop home for bags as long as it was fast. I called my
husband, who I had stay home from work that day, and told him to get
some stuff packed because we had to head to the hospital. I then
called my mom and asked her to come pick our two boys up. We were
going to spend the next couple of days at the hospital. The drive
home was very tough as I thought about all that my poor little 4 year
old was going to go through and how our lives would change. I
remember glancing back at her and trying not to cry. She was still
upset about the blood sugar test, but kept talking about everything
as we drove. I was 4 months pregnant and not feeling great, so was
not ready for the stress that was to come. We got home and my mom
was there to help. She took care of the kids while my husband and I
packed bags for us, princess, and the boys. My mom took the boys to
her house and my husband and I headed up to the hospital with
princess. The drive up to the hospital seemed to take forever. We
tried to keep things light, so she wouldn't be afraid. She kept
crying about being scared to go to the hospital. My husband and I
quietly talked about how our life was going to change and wondered
what we were in for. We went to the ER first and they did all the
necessary tests to get her admitted. Her blood sugar was 555. She
cried during the couple of blood tests they did at the ER. She had
fun playing on the stool with wheels and was so happy when they
brought her a Sprite Zero to drink. We waited for about an hour and
half in the ER and then she was officially admitted. We were taken
up to her room and they started working on bringing her blood sugar
down. Thankfully, I had caught it quite early, so she didn't need to
be hooked up to an IV. She did have to have shots for her insulin
and all of her poor little fingers were covered with bandaids from
the blood sugar testing. We had a lot of family come visit her that
day and the next. It was great to have so much family support.
Early the next morning, the training
and education started for my husband and me. There was so much to
learn!!! We had to learn how to test her blood, how to draw up the
insulin and give shots, how to test for ketones, how to count carbs,
weigh and measure food, and so much more! I remember taking notes
and trying to figure out how I was ever going to be able to do this.
2 days of constant education and practice, starting early in the
morning until evening! When it was time for me to give my first shot,
I was so nervous. I hated having to hurt my princess! To make it
worse, she was scared of getting her blood tested and really scared
of the shots. She wanted to use an eye mask so she wouldn't see her
blood being tested. When it was time for the shots, she would cry
and try to hide. It was heartbreaking! We also spent a lot of the
next day learning. My daughter had a great time playing with all of
the gifts people had brought her and with the toys at the hospital.
She also really loved their food. Overall, she had a blast at the
hospital. I am thankful that it was a good experience for her. For
my husband and me, it was very draining and stressful. I would find
myself wishing I could trade places with her and take diabetes away
(I still feel that way every day). It was so hard to watch her go
through everything. I remember asking the doctor about pancreas
transplants and wishing I could just give her mine. We were released
in the evening of the 27th and headed home. I was so
nervous and scared, I felt like I did when I brought my first baby
home from the hospital. I felt like she was a newborn again. I was
so worried I wasn't going to be able to take care of her properly and
so afraid to go to sleep that night.
As the days went on, she adjusted to
the blood testing and the shots. I was so happy when we no longer
had her run away and try to hide and we didn't have to hold her still
to give her an injection. Within a couple of weeks, she wanted to
test her blood herself and wanted to do it by herself the rest of the
time. She embraced her diabetes and was very excited to attend the
diabetes camp for young kids. She spent two days there and loved it!
She made some new friends and has told me many times that the good
thing about having diabetes is that she gets to make diabetes
friends. She loves diabetes camp and asks all year about when the
next one is. She is proud to tell people she has diabetes and likes
to show how she tests her blood as often as she can. She has not let
diabetes slow her down. She is able to eat anything she wants and
can participate in any activity and sport. In January 2015, I was
able to get the Dexcom approved for her, after fighting the insurance
for it for a couple of months. It is a continuous glucose meter. It
reads her blood sugar and transmits it to a receiver that shows her
glucose number, plus if she is going up or down. It has been
wonderful. It alarms if her blood sugar goes high or, most
importantly, low. It has allowed me to sleep a little bit better at
night because I know it will alarm if she starts to go low. She also
started on an insulin pump in February 2015. It has been great to
not need to give her 4 or more shots each day. She doesn't like when
we have to change the insulin pump site or the Dexcom site, but she
is brave and handles them well.
We have had our good days and our
very tough days. It is hard because her diabetes is always in the
back of my mind. It is scary to think that the life saving insulin
we give her can also take her life if she is given too much. Right
now she requires very little insulin, so even a small amount extra
can make her blood sugar drop too much. Counting carbohydrates can
be tiring and sometimes tough (not all foods give you the carb
count). We have to guess a lot. We have to try to keep her blood
sugar within a certain range. If she goes too low, she can have
seizures or even go into a coma, low enough and she could die. If
she goes too high, it could create health problems in the future or
she could go into a coma if she gets quite high. If she has high
blood sugar for too long, she can go into DKA (diabeticketoacidosis).
We have to carry a lot of supplies with us when we leave the house.
We always have to take her glucometer to test her blood, fruit snacks
and skittles for in case she gets low, and I carry a glucagon pen
(what we call the emergency shot) in case she ever goes unconscious
from a low. If we are going to be gone from the house for a couple
of hours, I also bring along extra insulin, syringes, tubing and site
for her pump and other supplies we might need. We often also have to
wake up to test her during the night. Diabetes never stops and never
takes a vacation. It is a 24/7, 365 days a year disease. I have not
had a solid night of sleep since she was diagnosed. There are days
when I see the insulin in our fridge and feel very sad, it is a
reminder of how fragile life can be.
Sick days are especially tough and
scary. A simple cold has to be watched because it can affect her
blood sugar and her body can create ketones. Ketones can make her
very sick and put her in DKA. The stomach flu is especially scary.
People with type 1 diabetes can often end up in the hospital from the
stomach flu. Their blood sugar can drop too low and it is hard to
bring it up when the child is vomiting. Her doctor has given us
papers telling us what to watch for when she is sick and how to deal
with different illnesses.
We have learned a lot. I am
especially grateful that she can live a full, long life because of
insulin. I am very grateful that we don't have to watch her waste
away like parents did before insulin was discovered. I hate that she
has to deal with this every day. I hope that one day there will be a
cure and she will be able to say that she USED to have diabetes. I
would love for her to be able to go throughout the day without having
to test her blood and pay attention to what and how much she is
eating. I am amazed at how much we have been able to learn and I am
REALLY proud of how well my beautiful little girl has handled things
and how brave she is!!! She loves to play outside, ice skate, dance,
play soccer, jump on the trampoline and play. She has decided she
wants to be a “Diabetes doctor” (an Endocrinologist), because she
will be able to help other people and kids with diabetes. She also
wants to be a singer. She loves to educate people about Type 1
Diabetes. She and I volunteer for JDRF and deliver the “Bag of
Hope” to children who have been newly diagnosed with Type 1. She
and I visit the children and their family at the hospital. I love
watching her happily go into a room and show the families that things
will be okay. She has brought relief to many parents who worried
about how their child's life would be after diagnosis. I am so proud
of my amazing daughter. Diabetes won't stop her!
A few picture from our time in the hospital.
