WARNING: This post became MUCH longer then I ever intend! I thought
I would do more of an outline, but I ended up jumping in with full
details! Since it's the only way I keep any type of journal/record of
my family, you'll have to live with it..... or not read it...... but you
know you want to! :) So put the kiddos down for a nap, grab some
popcorn and maybe a box of tissue and enjoy!
Life is settling down and
things are become routine. Looking back, we should have seen the signs,
drinking tons of water, eating everything in sight, rushing to the
bathroom every 5 minute, becoming deathly skinny despite her
enormousness appetite. I remember helping her get ready for a bath the
day we come home from the Dominican, I about fell over! She's always
been really skinny, like 5th percentile skinny, but the girl I was
looking at reminded me of the starving children they show worlds away
from here, skin and bones, even a slightly bulging belly! I tried to
fatten her up the next few weeks, but her appearance never changed. No
one suspected diabetes. Not even Mike who grew up with a diabetic
Father. My Mom thought something was wrong, but didn't have a clue as
to what it could be. Apparently my in-laws had a small inkling while
they were watching the kids, but were afraid they might over step their
bounds if they tested her blood sugar on Grandpa's meter while we were
out of town. We all have regrets about not catching it sooner, but we
can't live in the past. Luckily we caught it before it did any
irreversible damage. But I'm getting ahead of myself, here's how it all
went down!
BEFORE DAY ONE
Kylie had
been sick for a few weeks. She actually came down with a fever the day
after Mike and I left for the Dominican Republic. At first, it was just
a fever and a cough. Both her brother and sister got the same bug as
well, but they quickly got better after a few days. After a week, we
realized Kylie was not getting better. We took her to the doctor and he
simply prescribed an antibiotic. It worked great!! For two days that
is. Although the fever finally subsided, she was soon back to being
tired and moody again. On Thursday, February 21st she had an accident
at school. The poor girl had been having trouble making it to the
bathroom in time the last couple weeks. Both at school and walking home
from the bus. I decided if she wasn't better by Monday, I would take her to the doctor. Later that day her teacher called me to tell me she was
concerned. Kylie is usually so full of life, happy and sweet to
everyone she meets. For the last few weeks, she was dragging and just was
not herself, also needing to use the bathroom every 15-20 minutes and it
was a dire emergency every time! Because of her teachers concern, she
help confirm my feelings and I knew I had to get her into the doctor. So instead of waiting until Monday, I
called and made an appointment for the next day.
DAY ONE ~ Friday, Feb. 22
Friday
morning started out like most with the exception of Kylie going to her
doctors appointment instead of school. We got the kids ready, dropped
Kayla off at preschool and drove to see her doctor who happened to be at
the American Fork Clinic that day, which turned out to be more of a
drive then I expected. We were a little late, but they got us in pretty
quickly. I had to go down and talk to the finance department because
there were some major mix ups with our insurance and past bills. When I
finally came back, Kylie, Mike and Jayden were already back in the exam
room. I walked in just in time for the nurse to check her blood
sugar. She wasn't happy about being poked but tried to brave it out.
The meter read "HI". After the nurse took a little more blood, I took
Kylie to use the restroom. When we walked back in the door, the doctor
was already in the room and filled me on what he had just told Mike. They tested
her blood on two different meters and neither meter could read her
blood sugar level because it was too high! He then told us he was 100%
sure she has diabetes and we needed to take her to Primary Children's
Hospital where they would admit her. I fought back my tears pretty well
until we walked out into the cold. I was successful in hiding my tears
from Kylie, at least until I started making phone calls. I called
Mikes Aunt Carol to see if she'd be willing to take our other two
children. It was hard to keep my emotions in check. Then I called my
Mom and I lost it! I'm not sure Kylie understood what was wrong with
me, but she didn't seem too concerned with my outburst. We picked Kayla
up from preschool, drove home to pack a few things then headed off to
drop off Kayla and Jayden.
We arrived at the
hospital, and I will admit, I was hoping they would tell us the doctor
was wrong and it would be something entirely different and all we'd need
was a little medication that would quickly clear up the problem and
we'd be on our way. Soon, all hopes would be crushed. They took us
back and got some blood samples. It was torture for my little girl!
Not only does she hate the sight of needles (don't all kids), but the poor girl was
STARVING! By this time it was about 3:00 in the afternoon, she hadn't
eaten since breakfast at 8 o'clock that morning! The doctor told us not
to feed her, so there was nothing we could do to help with the hunger
pains. The nurses were sweet enough to give her a Sprite Zero. Soon
they were able to order her any meal her little heart desired! She
chose chicken nuggets with fries. After a horrible shot of insulin
which she screamed was stinging her (thank you rubbing alcohol), she was
finally able to fill her stomach! She proceeded to eat the ENTIRE
plate of food! One thing that's been different with Kylie lately is her
ability to out eat everyone, even her dad! The night before we had
french toast and bacon for dinner. She gobbled up THREE whole slices of
french toast! She was also sick as a dog afterwards and laid on the
couch complaining of a tummy ache. Well duh girl, you ate enough to
make anyone sick even without diabetes! Now we know that was probably
one of the worst things we could have fed her! Back to where I was.
After she packed away the entire meal, they sent us up to our room where
we would be staying for the next few days. The doctor had mentioned
staying over night, but didn't think it would more than that, he was
wrong! Protocol is three days. Partly to get her balanced and figure
out what amount of insulin she needs, and partly to teach us parents
everything we need to know. Had she been an adult, she would have just
been given medication and instructions at the doctors office and been
sent on her merry way!
Unfortunately Mike had to leave
for work shortly after we got settled in our room. But before he
headed out the door, he took the time to give Kylie a much needed
blessing. After that, it was just me and Kylie the rest of the night.
They had to give her another shot before she could eat dinner, and it
was HORRIBLE! She SCREAMED, "I'M NOT READY" over and over! It tore out
my heart! The nurses left for a few minutes to get the insulin ready
and I took that moment to ask Kylie if we could say a prayer. She agreed
and I lost it as soon as I opened my mouth! I know I've already told
this
story, but there it is again. I was hoping it would miraculously
work to calm her down, but it didn't. When the nurses came in again
with the insulin, she became hysterical all over! I held her as tight
as I could telling her it would be okay. She begged us to wait two more
minutes. The nurses were so sweet and patient with her! I pointed out
the second hand on the clock and told her when it got to the '9' a
second time, it was two minutes. The two minutes were coming to a close
and she said she wanted to wait until it was on the ten. We waited 5
more seconds and I held her down as she cried out! It was quickly over
and she settled down to enjoyed her dinner without another thought. I,
however, was torn up inside!! At that moment, all I could see was
torture in my little girls future! I didn't know how I was going to do
it, how SHE was going to do it! Kylie proceeded to eat every bite of her dinner! Her appetite
didn't look like it would subside anytime soon! Afterwards she came
with me down to the cafeteria so I could grab some dinner for myself.
She saw the ice cream machine and of course immediately wanted some.
She wasn't aloud to eat anything unless it was brought to her room so we
could monitor what she was eating. Once back to her room, we asked the
nurse if it would be possible for her to splurge on a little ice
cream. She said she could but it would have to wait until her bedtime
snack. She was okay with that. I should mention this girl was SPOILED
when it came to food! They didn't put her on any regulations and she
could eat anything her little heart desired, we just had to make sure we
gave her the right amount of insulin. This was a shocker for me. I
thought for sure she would be put on a strict diet, but I was wrong!
She can still eat everything she wants with the exception of juice,
syrup and sodas (however she can have all the diet soda she can fit in
her tiny tummy). They get in her system too quickly and will cause her
blood sugar to shoot up faster then the insulin can work. However,
those things are perfect for her when she's low, because of that
reason, so technically they're not off limits, just need to be given at appropriate times. The night came to a close and I went to bed with a heavy
heart. I prayed we would both get through this and she would have the
courage to get through this. The next morning I would realize my
Heavenly Father really was listening!!
DAY TWO ~ Saturday, Feb. 23
I
woke up that morning to a happy, starving little girl. We ordered her a
HUGE breakfast of pancakes bacon, fruit and yogurt. Once her food
arrived, so did the dreaded moment of poking. They pricked her finger
to check her blood sugar. This had bothered her, but it was nothing
like the shots. They figured out how much insulin she needed and got it
ready. I prepared myself to hold her down again. To my surprise,
Kylie buried her head in my chest, closed her eyes and held her breath.
That was it! The shot was over! No crying, no screaming, no holding
her down! I fought back tears! My little girl was becoming stronger!
We never again had to wrestle with her as tears streamed down her
cheeks! She was getting use to it, and becoming stronger! Although the
fact that she HAD to get use to it was still troublesome, my heart
filled with joy over this triumph! I praised her up and down, telling
her how proud I was of her! She became my hero in that moment! Would
you ever believe a mother would look up to her 7 year old daughter? I
never did, until now! In less then 24 hours, she was taking it like a
champ and facing it head on! Oh how I love her! She proceed to eat
every bite of her enormousness breakfast. The nurses tried to assure me
her appetite would subside. Had I thought I could afford to continue
providing her with all that food after leaving the hospital, I would
have gladly had her eat like that for months since she was SO skinny!
She
was bored most of the day. We spent some time in the playroom where
she did her most favorite thing in the world, art! She painted a TON!
Mike was taking forever to get back to the hospital that morning thanks
to some awesome snowy weather! Once he arrived, they started us on our
education! I won't lie, it was overwhelming and a lot of it went WAY
over my head! Luckily I was able to grasp the most important parts. My
mom also drove all the way up here in the awful storm to help out! She
was able to hear a lot of the information and get a good idea if it
all. After all, she's going to need to know this stuff if she's ever
going to watch Kylie for us again! During this learning curve, we had a
pharmacist come in and go over everything we would need. She showed us
the insulin pen and let us all give it a try! When she asked Kylie if
she wanted to do it, she actually got a smile on her face and was
anxious to give it a whirl! The pharmacist said it was the first 7 year
old girl she's ever had willing to try it! Apparently, most kids tend
to freak out at the thought. Kylie thought it was pretty cool and had a
good time with it! Later that day Mike and I also had the privilege to
stick each other with a needle so we could both understand exactly what
Kylie was feeling. Kylie thought it was hilarious! We asked if she
wanted to stick her daddy and she was pretty excited about it! Since
Mike had to leave for work, we decided to wait until the next day for
her to poke him. Sadly we all forgot and it never happened, but maybe
at her next doctors appointment?? After Mike left it was just Kylie, my
Mom and I. My Mom had bought Kylie a fun drawing board which she
LOVED. We all spent hours playing hangman! We had a great time and
made some pretty awesome memories! We also headed to the playroom where
we played fuzzball, Grandma and Kylie against me! They won of course,
but then my mom and I decided to play just each other! Who knew she
could be so competitive! I did win though!! Mostly because she scored
all my points for me! HAHA! Kylie got a kick out of watching us
compete!
I was actually able to give Kylie her shot
that night. I thought I could do it, but as I grabbed what little fat I
could off her tiny little thigh, I froze. I sat there with the needle less
then an inch away and stopped. I took a deep breath and tried to
swallow the lump in my throat. The nurse could since my nervousness,
she simply put her hand on my back and softly said, "Count to three."
So I did. Then I stuck her. It's something I thought I'd NEVER do, let
alone to my own daughter! I hated needles! I could watch medical shows
and see them cut someone open without blinking, but would turn my head
if I saw them with a syringe! It's gotten a little easier, but I still
have to take a deep breath before every shot.
We spent
the rest of the night watching movies and just enjoying each others
company. My mom wanted to stay the night with us, so I let her have the
couch and I crawled into bed with Kylie. It was actually rather
comfortable, but I spent the whole night tossing and turning! My mind
just wouldn't shut off! I had so many questions! I finally got up and
asked the nurse for some paper and a pen. I made my way down to a room
filled with old VHS tapes and other stuff to help parents and children
with their stay. I sat there and wrote down all the questions I knew I
wanted to ask the doctor. I made my way back to Kylie's room, thinking
I'd be able to go to sleep after writing it down, but I was wrong. I
laid there looking at my little girl, wondering what her future held. I
knew so little about this disease. From my eyes, I see my
father-in-law who was diagnosed at the age of eleven. He has more heath
issues than I care to count! Numerous surgeries, a kidney transplant, a
pancreas transplant and too many heart problems to mention. Honestly,
when he was diagnosed, they said he'd be blind by age 20 never have
kids and dead by 30! He survived the odds and proved them all wrong by
fathering FIVE children and is still alive and ticking at the age of fifty
something! Although he did go blind at one point in his life, thanks to
leaser surgery, it was restored, but left him without any depth
perception. While he's still chugging along, he is not without his
struggles. Was my precious little girl destined to follow the same
path? I knew so little about it despite having a diabetic
father-in-law. My heart was torn and at 4:00 in the morning I left my
daughters room to find the public computers where I started to poor out
my feelings on this blog! My mom had seen me leave and soon followed. I
didn't realize she was standing behind me as I tried to typed the
aching feels of my heart. She tried to comfort me as I sobbed like a
child in her arms. After a good talk, a few more tears and hugs, she
left me to finish my therapeutic writing.
DAY THREE ~ Sunday Feb. 24
I
was pretty much a mess the entire next day! Not sure if it was the
lack of sleep or the difficult journey now facing my perfect little
daughter; maybe it was both. My mom left early and headed to my house
to watch Kayla and Jayden so Mike's sister Becca could go home (She had
picked up the kids from Carols the day before and was so kind to stay
the night with them!). Mike arrived much earlier then I'd expected.
It's amazing how quickly you can move when the sky is blue! Soon, two
sweet women come into the room and introduced themselves as sisters
(who's names I do not remember) and proceeded to tell us they held sacrament meeting at 10:30. I don't know why, but the tears wanted to
come! I was able to fight them back, but every time I thought about
going to church, the tears would threaten to escape. When we walk down
the hall, and I saw the door open to where they held sacrament meeting, I
knew I was going to lose it! And I did! During the sacrament hymn,
the tears flowed like Niagara Falls! They wouldn't stop! After the
sacrament was passed, Mike took Kylie back to her room because she was acting a
little restless and we worried her blood sugar was getting low. He let
me stay where I proceeded to sob off and on like a child. I felt so
guilty! All around me where wonderful, beautiful children and parents.
Some children were in wheelchairs, and some where hooked up to
monitors, obviously facing much more challenging circumstances then my
own! I would be going home that day with my precious little angel and
she would live out the rest of her life, probably till she's old and
grey. I knew there were some children there that wouldn't be so lucky!
Their sacrament meeting is only a half hour long, and I tried to quickly
exit hoping no one would stop me. I knew if they did, I would lose
it! I was right! A wonderful lab tech stopped to give me some
comforting words and now my Niagara Falls tears SOUNDED like Niagara Falls! She let me cry for a few minutes and helped me calm down. She
gave me a much needed hug and we went our separate ways. I made it back
to my daughters room where I quickly headed to the bathroom to finish
my crying fest and clean up my face. As I was in there I again
chastised myself. I wondered how many tears that bathroom had seen, how
many wonderful parents were not as lucky as I was. I told Mike how awful I felt knowing there were plenty of children fighting for their
lives in this very building, and here I am, losing it because my
daughter just has to change a few things about her life. My dear sweet
husband held me and told me not to think like that, my feelings were
justified! Oh how I love that man! I don't know how I would have made
it through this without him! I was finally able to control myself and
our busy day started up again.
They quickly started us
on more education so we would be able to leave the hospital in time for
Mike to make it to work AGAIN! (As a side note, yes he could have
easily gotten off work, but we desperately needed the money, especially
with Kylie now in the hospital)! Anyway, it was finally time for the
doctor to come in and answer any questions we might have. And I had
them! I got out my list and went over them with her. Can I just say I
love her doctor! She answered all my questions and then some! She told
me numerous times things are not at all like they use to be! The road
my father-in-law had to take, is not even close to the road Kylie will
be traveling! Her diabetes will affect NOTHING! Not her kidneys, not
her heart, pancreas or even her ability to have children! As long as
she keeps on top of it, there should not be any complications from here
on out! They've come so far since the days my father-in-law was
diagnosed. The medication/insulin she is on is near perfect! We may
even be lucky enough to see the days of a cure for this life altering
disease! If only I could have talked to her the day before, I might not
have lost it during sacrament meeting! Afterwards we took Kylie to the
playroom like we had promised earlier. We let her paint one picture,
and then we had to go back to her room so we could get the last of our
information and sign the release papers. She finished her pictured but
was not happy about leaving. The volunteers in the room said she was
more then willing to stay while we finished up. I had no idea I could
leave her in there! SO wish I would have known that from the
beginning! We had kept her in the room throughout everything and it was
torture for all of us! She was so restless! Here she was, finally
feeling great after weeks of struggling to even move and we were making
her sit in her bed and watch a movie so her dad and I could learn
everything we needed to! So we left her in the playroom! Things went
smoothly and after about an hour, it was time to grab Kylie and head
home. I walked in to find she had painted SEVERAL pictures and was now
making a beaded raccoon key chain with one of the volunteers. After it
was finished we headed down to the main doors. Mike went to get the car
and we were on our way! Before we even made it ten feet Mike realized
we had forgotten her balloons! I quickly ran up to the third floor and
as I walked in I could hear balloons popping in the bathroom! I was 5
seconds too late! Kylie was devastated! We tried to tell her there
were balloons at home waiting for her since Mike had previously bought
latex ones which were not allowed in the hospital. It didn't help! We
had to stop at Wal-Mart to fill a prescription. I tried to make up for
the balloons by buying her a stuffed bunny. It worked! I know, I'm
horrible. I should have told her to get over it, but I just didn't have
the heart that day. We also took the time to find something to take
home for Kayla and Jayden. We found some bouncy balls that lit up and
flash different colors when you throw them. They were a huge hit! My
Mom was so kind to clean my house! We had left it looking like a
tornado had come through it! She also had dinner on the stove when we
walked in the door! She was such a great help! I only wish she and
Mike could get along better so she'd stay longer! They're both just way
too much a like, and butte heads too much. She left the next morning
and we were left to find a new routine with a diabetic child.
It's
actually been a easier road than I anticipated. Kylie is doing better
than I could have ever imagined!! No more then three days after being
home did she ask to test her own blood sugar! I was amazed! She did a
great job and now will not let anyone else do it for her. She actually
wanted to give herself the insulin shot, but changed her mind. In time
I'm sure! (Update: She actually gave herself her own shot on March 8th only two weeks after being diagnosed!) She's taken it on like a champ! She doesn't complain or
throw fits about it. I thought for sure we'd still be wrestling with
her, but she has amazed me! It hasn't stopped her at all! I know she
gets frustrated with not being able to snack as much. She can still eat
anything she wants, but needs to wait until after dinner if she wants
anything more then 15 carbs. With time, we'll get it all figured out!
I'm so grateful for the wonderful little girl she is! I'm pretty sure
if this had happen to me, I would have been angry at the world! She did
ask the hard question in the hospital about why she had to have
diabetes. I honestly wasn't sure how to answer it. I told her we all
have problems we have to deal with. Me with my hearing loss, Dad with
his asthma and sleep apnea, her best friend Cadince was born with heart problems, some people have to wear glasses and so on.
She then asked what problems did Kayla and Jayden have? That one
stumped me. I just told her I don't know, but they will have to face
problems later on in their lives as well. She seemed satisfied with my
answers and hasn't really asked many questions since, except for how
many carbs are in her favorite foods. :)
And FYI, we found out we expecting baby #4 the day after coming home from the hospital! Yep, it's been a roller-coaster of emotions for this prego mama!
