Sunday, February 15, 2015

Her Story, Our Story, Your Story: Kisses for Kycie and Changing the Outcome

Six years ago.

February.  It was a warmish day.  Warm enough that we were able to get outside a little.

Sweets was 2.  Almost 3.  She was riding her trike around in our driveway.  Having fun.

I needed to go to the store.  I was looking for beans to plant at school for our Jack and The Beanstalk unit.  It was too early and they were no where to be found.  I took Sweets with me and we ran down the street to the hardware store.

She was fine.  Totally fine.

And then she wasn't.

We got the store and she was lethargic. She didn't want to walk.  I had to carry her.  She was crying.  We went home and she was burning up.  Her eyes kept rolling back in her head. 

I freaked out.

She had been fine.  Active.  Happy.

The ferocity and speed of this illness scared me. 

We went to the doctor and there was nothing wrong except a fever.  The doctor was afraid she may have a blood infection and sent us for blood work.  I remember thinking that was awful.  They just pricked her finger. 

But then they called and said her white count was through the roof and they needed to do additional testing.  We went back.  This time it was an arm draw.  And that, I thought, was beyond awful.  I remember thinking I was tired of holding my child down. 

Little did I know....

Looking back, I wonder...

Was that the start?  Was that the moment her body turned on itself? 

She got better.... but after that was when the symptoms of T1 started.  The excessive urination.  The lethargy.  The change in demeanor.  The excessive thirst.  The weight loss. 

It was so subtle....

So subtle that we didn't notice at first.
And yet not subtle at all.  Later we would wonder how in the world we didn't see how sick she was.

By the time we FINALLY took her to the doctor....
Well, he said it was the flu.  I knew it wasn't. 

Luckily, I knew it wasn't.  Luckily, I knew what it was. 

And if I hadn't said... "I think it might be diabetes..."  He wouldn't have tested her.  He would have sent us home. 

By that time, she was already vomiting and in DKA.  If he had sent us home...

That's why the story of Kycie has really grabbed me by the heart.  It's thrown me right back to that scary place where we were 6 years ago.  It's broken my heart.  And made me so very thankful. 

I've hesitated about sharing her story.  After all, it's not my story to tell. 

But they have a facebook page now and want to raise awareness about this disease.  And I, of course, want to help. 

Because it's not just Kycie's story.  It's Avery's story, too.  And unfortunately, they aren't alone. 

taken from the Kisses for Kycie Facebook Page

Her Kisses for Kycie facebook page shares this...

On January 25th, 2015 sweet Kycie started complaining of a headache. On Monday she said her tummy hurt and a little later she threw up. Her mom and dad figured she was coming down with the flu. She slept all day Monday. She was giving her sprite and water to help her tummy. She did not want any food. Tuesday there was no change, and her brothers started to complain of stomach aches and sore throats. Jamie took Daxton and Kycie to the doctor on Wednesday. They were given antibiotics for strep throat. By Thursday night, she was worse. On Friday they went to the doctor and went to the ER at 1:00pm. By 5:00pm she was life flighted to Primary Children's Hospital with blood sugar of 1148. Her parents had no idea that sweet little Kycie had diabetes!

Enroute to the hospital she had a seizure and another one right when they got to the hospital. She has been unresponsive ever since. At this point her blood sugars are under control. After reviewing her MRI the doctors said that she has extensive damage to the brain. The brain had herniated into the brain stem.They said if she survives to prepare themselves for her to be severely handicapped. They will do another MRI on Tuesday and at that point with decide if they should consider taking her off the breathing machines.

The family is hoping for a miracle and knows that this little girl's life is in God's hands right now. You can show your support to the Terry family by keeping them in your prayers and donating to help with any financial expenses that they have. Let's join together to support this wonderful family! We love you Kycie! #kissesforkycie 

You can find her page to make donations HERE.

I haven't been able to stop thinking about Kycie.  About what could have been for us at diagnosis.  And what could have been when Sweets had seizures from low blood sugar a few years later.  Those moments are something I will never, ever forget.  And something I wouldn't wish upon anyone else.  Ever.  

I can tell you that love we felt from all the facebook posts, comments, texts, etc this past week really helped make Sweet's illness and ER visit easier and less scary.  I say we do that same for Kycie and her family.  Share this blog.  Share her page.  Leave them some comments of love.  Let them know they aren't alone.  Let them know the DOC is behind them.

Type One Diabetes kills.  It's wrecks bodies.  It takes perfectly healthy people and changes their lives forever. 

We need a cure. 

We need doctors to screen for this disease.  It's as simple as a finger stick or a urine dip.  In the scheme of things, that not that big a deal.  I know it's more complicated than that but still...  It's worth it when you're talking about lives. 

I'm tired of reading about children (and adults) losing their lives to this disease because it wasn't caught in time.  Because they didn't know. 

We did know... sort of... and it still didn't keep her out of DKA.

It's time to change the story.  Time to change the outcome.  Time to advocate for funding, research, and prevention.

I urge you to get involved.  Whether it's with JDRF, the ADA, DRI, Dr. Faustman... Our end goal is all the same.  Be it in your school, community, state, or country... Nothing is too small.

Do it for Kycie.  Do it for my child.  Do it for yours. 
Do it to make a difference in lives today and tomorrow. 

Friday, February 13, 2015

The Tipping Point: Stomach Bugs and T1D

Those three little words...

Three words no D parents wants to hear...

"I threw up."

Those are the words we heard about 2:30 Monday morning.  Luckily she had been running low (we should have known...) and her pump had been shut off or we would have been in serious trouble. 

For those who may not know, a stomach bug is especially difficult with type one diabetes.  Here's why... when you have a tummy bug, food does not digest normally.  This often causes low blood sugar before a person actually gets sick.  It also causes lows during and after.  Another issue is if the person throws up food that they have been bolused for.  When that happens, they have insulin in their body and no food... that means low blood sugar.  How do you treat low blood sugar?  Food.  But that doesn't work so well if you're throwing up.  Then, as with any illness, you develop ketones.  Everyone gets ketones when they're sick.  But when your pancreas works, it gives you enough insulin to bring them down safely.  When you have T1, you're not making insulin on your own.  If you want to get your ketones down, you need fluids and insulin.  Both of those are difficult when you have a stomach bug.  Because if you're not eating - insulin is going to make you go low.  And if you go low, you need food.  And... you see the cycle here.  Add in that ketones make you feel sick to your stomach and throw up when they get high.  And they can be very dangerous and lead to ketoacidosis (which is life threatening) if not treated.  It's just a big 'ol mess. 

Sweets spent the morning on the couch feeling poorly.  She had a fever and ketones were on the rise.  I had her sipping water and trying to eat a popsicle because I knew she needed insulin... but her blood sugar was hanging around 100.  And that wasn't high enough to give her additional insulin.  At least without food.

We've dealt with a few tummy bugs in our years with T1D.  It's never fun.  But we've learned what to do.  We know how to handle things.  And we know that no one wants to go to the ER.  So we do our best to manage it at home.

The ER just isn't fun.  It means IV's which is good for getting fluids and medicine to fight the nausea.  But it's not so fun for little girls who don't want any more needles.  It also means ER doctors who are trying their best but often don't know all that much about T1D. 

We do everything we can to stay out of the ER. 

But with every illness (at least the puking ones), there reaches a point when I start getting nervous and ask myself, "How much longer are we going to be able to handle this on our own?  At what point am I putting her in danger?"

The tipping point. 

That point came for us Monday afternoon.  She was still throwing up.  Nothing was staying down.  And ketones were skyrocketing.  (Blood ketones were up to 2.5.  Anything over 1.5 is considered large.)  Her little lips were dry and cracked.  She had bags under her eyes.  And her color was grey.  She looked really bad.  Really bad.  Like death. 

So, I called the diabetes center who told us to take her to the ER. 

The diabetes nurse I talked to was concerned that her blood sugar was going to drop on the way to the hospital.  She was afraid with as sick as she was and with nothing going in that the Glucagon wouldn't work.  That scared me - I had not heard that before.  Not much scares any more... but that did. 

We rushed around getting ourselves ready and put her in the car.  Luckily, we are about 20-30 minutes from the Children's Hospital ER.  But that day seemed like an eternity.  The entire way there, her blood sugar was steadily dropping.  Until she was reading in the 60's.  I was giving her one smartie at a time to try to at least hold her steady. 

We get to the ER... and we had to STAND IN LINE.  Apparently, every sick kid in the area uses it as a doctors office.  That's a blog/rant for another time.  But seriously.  They took us right back and got her into a room.  They did blood work and we waited. 

It's times like this that make me lose patience with the ER.  I know they are doing what they have to do.  But I knew she needed fluids.  However... we waited. 

The ER doc came in and told us that her blood work looked good and she had no ketones.  Say what?!?  We told him what our meter was reading and he said he would call endocrinology. 

He came back shortly to tell us that while on the phone with endocrinology, he realized he had misread the report and yes, her ketones were indeed large. 

At this point, I'm thinking.... Fantastic.  Well, you can probably guess what I was thinking! 

They gave her fluids and some zofran via IV. 

And then the new ER doc arrived.  She came in to talk to us and after a few minutes said, "You folks obviously know what you're doing.  What do you think we should do?  What would you do if you were in charge of her care?"

It was like the angels started singing! 

We were glad she was getting fluids and zofran but our concern was that her ketones were still large.  At this point her blood ketones were reading 3.2.  I have never seen anything that high before.  I didn't want them to release us before doing something about that or we'd be back in the same boat. 

I suggested a glucose drip so we could give insulin. 

She agreed and called endocrinology again.  They did not agree.  They felt that she needed to try eat.  If she could hold down the food, we could bolus.  If she couldn't, she needed to be admitted. 

So she ate.  A little.  A few bites of soup.  A couple bites of banana.  And some Froot Loops.  She loves her Loops but rarely ever gets those. 

And it stayed down.

So we were able to give her a little insulin!  Yay!  Before discharging us, they took her temp which was up to 102.  But home we went with some ibuprofen. 

Waiting for Daddy and the car... always smiling!

By morning, her temp was down.  Ketones were down.  They were still large but a lot lower than they had been. 

We thought she was on the mend.  We thought she was better, 

And then she threw up again. 

And ketones went back up.

And her fever came back.

We spent the next four days in this limbo.  She felt sick because her ketones were too high.  She needed insulin to bring them down.  But she couldn't eat... and if she couldn't eat, we couldn't bolus.  And if we couldn't bolus, we couldn't bring down the ketones.  And... on and on. 

She was really sick.  She laid on the couch and didn't move.  If you know her, her sitting still is NOT a good sign.  She wouldn't eat.  She wouldn't do more than sip water or lick a popsicle.  Bg hovered between low and 110.  And ketones stayed high. 

And so I spent the next four days at the tipping point. 

Illness doesn't usually faze me much.  I know what to do.  I know how to handle things. 

But this time... This time I felt like I was constantly walking the line between being able to handle this and.... not. 

And as much as that made me nervous, it also surprised me. 

I've been going along thinking I've got this.  That I can handle what diabetes throws at me.  I may not be perfect at it... But...

But what if I can't handle it?

I've been all "diabetes can't stop her.... diabetes can't stop me... people with diabetes can do anything everyone else can do..."  And all of that is true...

But maybe that's made me forget that diabetes doesn't play fair. 
That diabetes isn't easy.
That it takes a lot of work.
That it's still dangerous. 
That it really just sucks. 

Sometimes it's easy to forget.  That while diabetes has made your kid incredibly tough and amazing... it's done it through trial by fire.  It didn't just happen by accident.  It happened because your kid (and yourself) have stood tough through all the crap diabetes has thrown your way. 

All the testing, carb counting, bolusing, supply ordering, site changes, insurance fighting, decision making, temp basals, corrections, ratio changes, ketone testing, doctor appointment, lows, highs, needles, prescriptions, lancets, strips, alcohol wipes, cgms, pumps, hospital visits...

All that.  And more.

We've handled it. 

And so... when push comes to shove... I know we'll be able to handle this, too. 

Even when we're at our tipping point. 

More inspiration from Pinterest...  

 I couldn't resist.  Sorry about the language - but sentiment is right on. 


Sunday, February 8, 2015

We Have A Name!

Thanks to everyone who participated in our "What's in a Name?" Giveaway with Lauren's Hope

We loved seeing all the really great, unique names that you came up with! 

Last week we narrowed it down to our top five choices and submitted those to Lauren's Hope. 

So without further ado... the winning name and winner of this beautiful bracelet is....

AVERY'S HOPE from Cheddar14!

If you would like to buy one of your own or purchase another one of their incredible bracelets (or other jewelry... they have lots of great stuff) check out that link over there to right! 

We love our Lauren's Hope bracelets!  Avery wears hers 24 hours a day and it's not only survived the wear and tear of at least a year of her shenanigans but it still looks really pretty!  We can't recommend them enough! 

Thanks to Lauren's Hope for helping us celebrate ONE MILLION HITS! 

And stay tuned... I've got some more great giveaways coming up! 

Monday, February 2, 2015

The Top Five: What's In A Name Giveaway

Last week, I shared with you an awesome opportunity to win this beautiful bracelet created especially for us by Lauren's Hope!

All you had to do was come up with a name...!  And when I asked you to get your creativity on, you sure did!  We were asked by Lauren's Hope to pick our Top Five favorite names.  This was NOT easy!  We went over the list again and again.  After much discussion, we were able to narrow it down to a few of our favorites. 

Our Top Five Names are.... (in no particular order)

1.  Bravery Blue - from Cecilia
2.  Avery's Hope  - from Cheddar14
3.  Avery's Journey - from Jazmine Gaytan
4.  Princess Blue - from Flip Coo
5.  Hope Floats - from Misty

This was a tough call!  There were lots of names we liked!  I had a little input (Hope Floats is one of my most favorite movies!) but Avery made most of the decisions (Can you tell?!?). 

We will submit these names to Lauren's Hope for review and will announce the GRAND PRIZE WINNER soon!

Thanks for playing... And thanks for reading!