Weston’s Story

Originally posted September 2018

Today’s Wednesday story is pretty amazing.  My neighbor Kaylene is one of the strongest, bravest mom’s I’ve ever met.  She loves her kids so deeply.  And she does everything in her power to make sure her kids are safe, loved, and cared for.  I hope your hearts will be touched, and your minds fed as you read this tender story of her youngest son, Weston.

“It was March of 2014; my son Weston was in kindergarten and had just barely turned six.  He was a happy, active, funny little guy.  He loved playing Lego’s, riding his scooter, spending time with his grandma, and helping his grandpa with projects.

Weston 1

Over the previous few months, Weston had had some random tummy bugs, but that didn’t seem out of the ordinary for a kid who was now in public school and getting more exposure to bugs.  I had also noticed Weston had been looking thinner, but I just  assumed he had recently gone through a growth spurt, making him only appear to be thinner.  There were a few other random things going on, nothing that seemed to be a big deal on its own.  I was clueless to what all those things combined would end up meaning and how our lives were about to change forever.

On March 11, Weston went in for surgery to have his tonsils and adenoids removed.  The procedure went well, and at first his recovery was also going smoothly.  About 3 days after surgery he had even felt well enough that he was asking for a “beef” sandwich and milkshake from Arby’s.  With a belly full of solid food and protein, he started to perk up and have some energy…but that didn’t last long.  The next morning, he was complaining of an upset tummy which I shrugged off as putting too much food in a stomach that  hadn’t had much more than liquids in days.  He didn’t eat much that day, he would start to feel a little better and I would feed him only for him to feel ill again.  This went on for days.  I kept trying to keep liquids down him; Slurpee’s, Ensure, Sprite, anything he was willing to put in his body, I would give him.

By Wednesday, March 19th, he looked terrible!  He had lost quite a bit of weight, he was pale, his eyes were dark and sunken in, and he was very lethargic.  I was definitely starting to worry.  That night the vomiting started.  If he put it in his body, it came right back up.  He did this all night and all the next day.  He refused to eat anything at all but he kept guzzling water like crazy.  The puking continued so I tried to get him to only take sips of water and also sips of sprite to settle his tummy.

By the afternoon of the twentieth, his condition seemed even worse.  I called both the ENT’s office and his pediatrician.  The pediatrician thought it was best to work with the ENT, assuming it had more to do with the recovery from his surgery.  The ENT’s office gave him a prescription for Zofran to settle his stomach but It just came right back up within a minute or two.  That night as I put him in the bath, I was horrified!  He was nothing but a skeleton with skin!

Weston 2

He could barely move on his own, he wasn’t talking much (which was very rare), and he didn’t want to do anything at all.  He just lay there dozing between vomits.  I was really starting to panic but kept reassuring myself that the ENT didn’t seem concerned.  This year H1N1 had hit hard and was killing heathy adults.  I began to wonder if this is what was plaguing my baby.  I knew if Weston had somehow been exposed to H1N1, that he would not survive it.  He was just too frail and tiny to begin with.  About 2 AM on March 21 st he finally dozed off in what appeared to be a bit deeper sleep, so I also dozed off.  At 4 AM, I was awakened by my dad.  He told me that he had found Weston wandering in the kitchen and when he had asked Wes a question he responded with something that didn’t make any sense.  We decided at that point that it was definitely time to take him to the emergency room.

As I carried my frail, pail, nearly lifeless little boy into the emergency room, I couldn’t help but wonder if I would be leaving without him.  I was terrified!  The Emergency Room was able to take him back right away.  Weighing him was difficult because he didn’t even have the strength to stand on his own.  At barely 6 years old, Weston weighed in at 27 pounds!  Although he has always been little for his age, this was definitely extreme.  The nurses had a hard time setting the IV because he was so dehydrated.

Weston 3

When they finally got it, they drew some blood to immediately start running tests and began pumping him with fluids.  I felt calm for the first time in days.  Maybe partly out of sheer exhaustion, but there is something in knowing that no matter what was about to happen, I was in a place that could give him the best help possible.

Not much later, a nurse came in to report that Weston was obviously dehydrated and his blood glucose was 967.  There are a large number of you who would know what this meant…not me.  I’m pretty sure the look I gave the nurse was one you might see on a child’s face if you asked them to explain the theory of relativity.  Of course, being a nurse, she wasn’t allowed to actually explain what this meant because it is the doctor’s responsibility and liability to diagnose the patient.

I believe the doctor’s diagnosis was, “It appears to be Type 1 Diabetes.”  Other illnesses and diseases can cause these symptoms, but he was pretty confident that Weston had Type 1 Diabetes, also known as T1D and more commonly known by its less accurate name, “Juvenile Diabetes.”  The ER doctor then proceeded to tell me that, had I not brought Weston in when I did, I likely only had a couple hours before we lost him.

This diagnosis did not in calm my fears in any way.  Thus far, my experience with diabetes (at least as far as I realized at this point) was with old people who had bad eating problems (Sorry! Type 2 diabetics, I now understand that those are total stereotypes for you as well).  Here in Utah, when a child is diagnosed with T1D, they are required to spend 3 days at Primary Children’s Hospital while they work on stabilizing the child as well as educating and training the caretakers.

As a single parent, sole provider, and college student, this could have been “the straw that broke the camel’s back.”  However, I have been very blessed with amazing people in my life.  My parents were available for my other two children.  Making sure they were fed, had clean clothes, and got to school and other obligated places on time.  My two sisters met me at Primary Children’s, before we even got checked in, to be my emotional support.  Not to forget the many neighbors and friends who called and messaged me, willing to do anything I needed.

While Weston and I spent three days in the hospital shoving our brains full of information, options, warnings, and practice.  I was surprised at how quickly Weston began to feel better as we were able to get his blood glucose into a healthy range.  It was mind boggling to see him at deaths doorstep and less than twelve hours later he was pretty much his old self again–well, the old self that was exhausted anyway.  While in the hospital we learned to check his blood glucose which meant finger pokes.  This he would have to do at least 5 times a day, more if he felt “off.”  We also had to learn to give Weston his shots.  He would now have to have a minimum of four shots a day but most days ended up being about 5 or 6.  To teach us this, they brought in oranges and had us practice on those.  Next, they asked my sister and me to practice on each other…that should give you an idea of just how much my sister loves us.

Then it was time for me to give Weston his shot.  That was one of the most difficult things I had ever done at that point in life.  Doing something to your child, knowing you are inflicting pain, is the worst.  After that first shot, Weston and I just cuddled up and cried together.  Not necessarily just for the physical pain of the moment but for the idea that life as we knew it was never going to be the same and the new way ahead wasn’t looking that great.

Weston had over 1500 shots and more than 2000 finger pokes that first year.  We have since purchased him an insulin pump which has an infusion set that only needs to be changed out about every 3 days, reducing the number of shot-like pokes drastically.  He also has a continuous glucose monitor (CGM) that has a filament under his skin and a transmitter on the outside.  This gives a reading of his blood glucose every 5 minutes enabling us to better avoid dangerous high and low blood glucose.  Wes still needs to calibrate the CGM twice a day by doing a blood check that requires the finger poke, however, that is still much less often.

Life will never be the same or easy for Weston.  Every illness can easily put his blood glucose out of control, the mechanical devices can fail him, it sometimes means sitting out of a sport or an activity he enjoys, and the cost is going to be a burden to him  forever.  We are doing the best we can to keep him healthy in order for him to have the best life with as few complications as possible.

weston 5

Weston is an amazing, bright kid who is not letting Type 1 Diabetes keep him from living life to the fullest.”

These are the signs to watch for if you every suspect your child might have Type 1 Diabetes.

Warning Signs

I hope that your heart was touched today.  I know that when you are in the hospital and your baby is so sick, it is one of the scariest experiences, because helping your child is not in your hands anymore.  We were all so thankful that Weston pulled through!  He is a light in their family.

As we strive to keep our hearts close to the Lord, we are better able to receive revelation for ourselves and our family when we most need it.  I hope that through these stories I share, that we all are learning and growing.  And also that through these stories, you see the angels around ready to help.  There are so many good people in this world.  And when we go through tough times, they are ready to come to the rescue.  I’m so thankful to Kaylene for sharing such a tender time in her family.  Kaylene truly is such an example to me of a great mother who puts her kids first.  I hope that many blessings come to her family.

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