Tuesday, January 31, 2017

The 'What If' Game

Posted from Facebook 1/20/17

After almost 8 years with Type One Diabetes we have learned to roll with most anything it throws our way. Some days are easier than others and some days are much harder. 
Last night while Nate slept his blood sugar dropped unexpectedly. Those little red dots are sever hypoglycemia that he slept through and we almost missed. By the time his Continuous Glucose Monitor alarmed, his blood sugar was 47. I fear it had actually gone much lower but by the time we got to him his body had already started fighting the hypo, thankfully. 
His liver dumped glucose (its much more complicated - won't go into it all here) which saved his life. We gave him 10g of carbohydrates which would normally raise his blood sugar by about 100 but his blood sugar soared over 500 and stayed there most of the night. 
It was a long night filled with what-ifs, what could have beens, and FUD. I share this not looking
for sympathy or praises but instead to educate. 
Diabetes is not a joke, it's not a punchline, and it's not to be taken lightly. 
I don't exaggerate when I write this --- 
We could have lost him last night. While he slept. In the next room. 
I can't even think about it without tears stinging my eyes and rolling down my cheeks --- it makes my body physically ache to go over what could have happened. And I went over it in my head all night long. 
There's nothing funny about that. 
And I'm not alone. There were moms and dads around the world carefully watching over their children last night. Forcing them to eat in their sleep to keep them alive, carefully calculating insulin doses to lower dangerously high blood sugars, and some just watching the rise and fall of their children's chest because sometimes the fear is so overwhelming. 
There were adults doing it all too. These babies grow up and diabetes doesn't go away! Wives checking husbands, husbands battling with hypoglycemic wives ... ❤️
It's a tough disease and the people that live with it are amongst the strongest people I know! They are warriors. 
--- Thankfully smooching Nate's face off this morning while he rolls his eyes, grins his silly grin, and allows me to love on him all while he has no idea what happened last night.  


Saturday, December 24, 2016

The Hivory Happy Holiday Season Post

Happy Holidays from the Hivory Family -

This year - 2016 - is not our year!  We are a blended family - what that means for us most of the time is more children, more happy, more love, more smiles, more laughter and sometimes more hard, more sadness, and more tears but mostly more happy! But every other year - the even years, Ian and I are left without all of the children, the smiles, the laughter, and no matter how many years go by -- it doesn't get any easier!  Look at those sweet faces - how can we Christmas without them?

The answer is -- we don't!  Today is the 24th but it is not "our" Christmas Eve and tomorrow will be the 25th but not "our" Christmas day.  The wonderful thing about our family is how well we all get along -- the children are SO loved!!  We really could not ask for anything better for them - they are with the rest of their families celebrating and sharing their smiles and happiness with them this year!

Ian and I busy ourselves during this time and although it is never easy we are comforted by the love, happiness, smiles, and cheer that we know the littles are experiencing. That being said the tears still flow and my heart still aches to be with them during this time!

So, before I take myself to the spa for a day full of pampering I will share these amazing smiles with the rest of you . . .

Thank you to Natalie K for capturing all of this happy!

Emma - Age 12

Lexi - Age 12

Sophie - Age 10

Nate - Age 8

London - Age 6

Aren't they the cutest?  And getting so big! How did we get so lucky?  These kiddos really make our house a home, our hearts so full, our family complete, and our bank account SO empty!  

From our hearts to yours . . . Merry Christmas and Happy Hanukkah! 

Thursday, November 3, 2016

Diabetes -- Facts, Love, and Grace

I posted this picture one year ago today at the beginning of Diabetes Awareness month.  It came up in my FB newsfeed this morning.

The same medicine (insulin) that keeps Nate alive, is the same thing that can kill him if given just a little too much.

Last week we had a terrible scare.  I had just finished getting ready for an earned Plexus event at the Gaylord.  I was in my hotel room about to head out and my phone was blowing up with text messages.

Ian texted me and told me that Nate's insulin pump, his Omnipod had "alarmed" that there was an occlusion and it had stopped working right as they were sitting down for dinner.  They were out so we both agreed that an injection was the best course of action.

A few minutes later Ian sent a follow-up text to confirm the amount of insulin given.



Is this what 2.35 unites looks like?

Over here!

He knows me so well.  He knew I was distracted so he kept trying.  His gut told him to do so.  I finally responded.  I called him right away.  I was hoping that he was kidding but he was not.  He had mistakenly given Nate 23 units insulin instead of 2.35.

How could this happen?
I was scared.
My head was spinning.
I was having trouble processing.

I wanted to be with Nate.

We made a plan to meet at the house, load up the kids, and head to the hospital.  We did the math and there were just too many carbs to consume to keep him safe.  To keep him alive.

The drive home was excruciating.  6 o'clock traffic.  Ian was feeding Nate.  Cookies, cake, and candy - Nate's dream come true!  But his tummy started to hurt and he couldn't eat anymore.

Ian was so calm, yet nervous at the same time.  He felt overw
helming guilt.  I could see the fear and disappointment in his eyes.  It made me love him even more.  You see, anyone could have made this mistake. It is not terribly uncommon.  Most people have no idea how small 2 units of insulin actually is when drawn into a syringe.  It is difficult to draw up such a small amount.  These is no 5 on the syringe so often the 10 is mistaken for 1.0.
In the hospital I have noticed that when the nurses give insulin to a patient a 2nd nurse has to come in and verify the dose before it is given.

---23 units could have been a lethal dose for Nate.

We got to the hospital and an insulin overdose gets your priority access.  We went back and after blowing out 2 IVs Nate's blood sugar was going up --- not down!  He was so nervous, so scared -- his adrenaline was pumping.  They finally got an IV in for a glucose drip and we waited for him to bottom out.  It never happened.  TWENTY THREE units of insulin and he never dropped below 190.

What in the world?

Was it the carbs?  Was it the adrenaline? Was it the combination?  Was it my sheer will wishing for my son to be ok? Is it possible to wish that hard for something?

On a different note --- isn't he the cutest boy you have ever seen?  LOVE . . . Super Nate!

We stayed at the hospital for about 5 hours to make sure Nate stayed safe.  We watched Big Hero Six and Ant Man.  Nate charmed all of the nurses and the doctor.  Here really is adorable.  Ian never left Nate's side.  I love the way he made him feel safe.

The 1st question the few people we have shared with have asked me is, if I was mad at Ian?

I was absolutely not mad an Ian.  It could have happened to me and he's my husband -- we are family.  I stand beside him, I support him, I love him.

That is what parents do--support, show grace, forgive hard, love hard, and stand united.

Tuesday, October 18, 2016

Delivery Day & Waiting for Remission

I've been waiting all day.  I called twice.  It should have been here by 3p.

Here we are now 7p and the UPS truck just rolled up the street.


Sophie's next dose of Humira is this Friday and I've been waiting for it to arrive.

It is stressful for me knowing she needs this medication and not having it on hand.  I have to call each week and set up a time for delivery.  Then wait.  I hate the waiting.

This week is a big week.  Her 3rd dose.  Friday.

An update on Sophie:

When we started the Humira Sophie was taking 40mg of Prednisone to keep her symptoms at bay.  We have dropped her dose by 5mg each Saturday since her 1st dose.  A week and a half ago we dropped to 15mg and after 2 days on that dose her symptoms started coming back.

She had been to the fair with her dad ---
Fair food.  It had to be the fair food!!

But, it was not the fair food.  The symptoms increased.

This last weekend while we were on vacation, her dad and I decided to increase her dose back to 20mg in hopes that she would start feeling better.  Her doctor fully supported this decision. After several days on the higher dose ---today she is feeling better with no symptoms.

What does this mean?  Why is this happening?  Is the Humira not working?

When she started Remicade it seemed to have worked instantly.  Maybe it wasn't instantly but she had been so sick that it did seem to bring almost instant relief.

It has been a tough 7 days.  I have no idea what our next step will be.

She is scared.  I am scared.
She is concerned. I am concerned.
I cannot tell her everything will be ok.  I do not know that it will be.

Her doctor has ordered stool studies, called in more prednisone, and wants to start her on Flagyl.  She said it can take time for the Humira to build up in her system.

More waiting.  Waiting for it to work.  Waiting to find out if it will work.  Is this going to work?  Please let this work!

An update on the mom:

These last few days/weeks/months have been hard.  I have struggled more than I thought I would.  It is hard to see your children struggle and/or suffer.  She was in remission for so long, that besides going to the hospital every month for treatment, it was easy to forget that she has such a debilitating disease.  It was easy for me to push it all down and live as normally as possible.  My understanding is that this is pretty common.  Once you get through a bad flare into remission you just want to forget.

Maybe I never fully dealt with her diagnosis.  It was just months after Nate was diagnosed with Type One Diabetes.  I was probably in shock or denial or still in the diabetes diagnosis haze.  And let me be clear --- there was a big haze!  There were tears and there was sadness but it was all a blur from the haze.

I'm not sure I ever really sat with the sadness. I was too busy making it better for her and for Nate and for everyone else.  I firmly believe that it is ok to be sad and I think for a long time I have tried to hide all the sad and the mad from Sophie but I know now it is ok for her to know.  She has always been so stoic and brave --- I want her to know it is ok for her to be sad and mad or both at times.  It is also ok to be scared.  This is a big disease to carry and she needs to find her way.  I can't do it for her - I will be beside her every step of her journey to become her own warrior.  We have always called ourselves warriors.  Warrior Mom and Warrior Little!

I am reading the book, Love Warrior by Glennon Doyle Melton.  This woman is in my head and in my soul.  As I was reading her words yesterday on the plane, they are so much of everything that I am and that I believe and that I want for my children.  She is like a magical unicorn that has been inside my crazy brain! Or maybe we are all more alike than most feel comfortable admitting? Slightly off topic but it is a great book that should be read by all!

My biggest take away yesterday while reading was a reassuring confirmation on something I had written down earlier this year and she said almost the same thing in her book.

For my children -- Making them warriors: I cannot take away their pain, I can sit with them in the pain because it is part of our journey.  We can handle hard things because we are warriors! With all of my soul I want them to be warriors and always warrior on! Part of becoming a warrior is being brave enough to feel it all and walk through it all.  That is how you find the beauty -- you have to walk though and feel it.

I feel it all and I will continue to walk through it.

Sophie and I are going through a sad season but we will walk through it together.  I love walking beside her and watching her grow strong and resilient.

Wednesday, October 12, 2016

Humira - Round Two

Last Friday was Sophie's 2nd dose of Humira and our 1st time to do it at home ourselves.  There were a few tears and a lot of nerves - Sophie and I were both very nervous! 

She was nervous because she knew how it was going to hurt and I was nervous because I knew how it was going to hurt her too.  

It goes against everything in your mommy soul to hurt your child.  I remember feeling this way after Nate was diagnosed with diabetes when I had to hold him down to give him his insulin shots.  Those shots have gotten easier for us and I know the Humira shots will get easier for us both with time too.  

Friday, October 7, 2016

A New Hope - Humira

On Friday, September 23rd, we began a new chapter in Sophie's Crohn's Disease story.  After we got the results back that told us she had built up antibodies to the Remicade we immediatly began the insurance battle for Humira.  It was a long and heated battle but in the end we came out victorious and the Humira was delivered while Ian and I were still in Hawaii.  As soon as it arrived, I made plans with Sophie's doctor to come into the hospital to learn how to administer the meds.  We had heard and read absolute horror stories about Humira.  About the pain that it causes after the injection.  Sophie had heard them too.  We both had a lot of apprehension and fear about this new chapter.  Sophie's doctor recommended that we see the GI Peds Psychiatrist before coming in for the 1st injections.  

I am so glad we were able to do that!  She worked through both of our fears, gave Sophie some great coping skills, and a few tips for getting through the injection without it being quite so terrible.  It was good for us both to be able to have someone to talk to about it and calm our fears. 

On the 23rd we made our way to the hospital, all a bit nervous for what was about to come but we had a plan, and there was a calmness --- there was also a promise of Chick Fil A and the rest of the day off from school!  SCORE! 

Here is what I posted on Facebook after we were done.  I meant every word.  She is so strong, so stoic, and so very brave:

We did it. She is so brave. I do not take bravery lightly --- she was so strong and brave and fierce. 

She didn't want any distractions (ice, candy, numbing cream) --- she wanted to just do it. 
Y'all I love her brave self so much!!

The nurse gave the 1st shot and I did the 2nd one. She tried so hard not to cry but I told her it was totally fine if she wanted to do so ---- so we cried together.  My mommy heart broke to pieces watching her be so brave and endure such pain while trying to keep her brave face on. 

She said it was worse than she thought it was going to be --- pain level 10 out of 10. She did so great! 

We will begin to taper the prednisone and should know if the Humira is working by mid-October. 

This is being posted on Friday, October 7th, it has been 2 weeks since her 1st injections.  Today she gets her 2nd dose but we do it at home.  On our own.  

Stay tuned for my next post.  Things have been hard.  Harder than expected.  Mostly for me.  It is so difficult watching Sophie deal with so much.  I fear I have fallen back years.  She is doing so much better than I am.  I have been dreading this day, yet here it is . . . 

Thursday, September 1, 2016

The End of Remicade

From Facebook Post 8/31/16:

Last night we got the word from Sophie's doctor that her body has built up antibodies to the Remicade. 
In July we had hoped that a tummy bug from Disney had thrown her out of remission but when she got sick again 4 weeks later we knew it was something else. Last night our suspicions were sadly confirmed. Now we will begin a new journey seeking remission for the Doodle. 
I'll be speaking with her doctor today about Humira. In the meantime she begins another round of steroids. 40mg of prednisone. Aw LORT! #SteroidSophie 😬
Thank you so much for all of your kind and encouraging words on my post yesterday. They were read and they were felt ❤️.

Just a Mom

I am NOT a doctor, nor do I play one on this blog.

I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.

The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.

Please consult your doctor if you have any questions or concerns about your health care options.

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