It's been awhile

It has been awhile since I posted.  It has been two years now since my Zach was diagnosed with Type 1 Diabetes.

So what have I been doing in those two years?

Surviving, learning, and appreciating life.  

There is nothing like a diagnosis like Type 1 Diabetes to put things into perspective.  Life is fragile.  Life is precious.  Never EVER take it for granted.

Don't get me wrong, I am TIRED.  Not just I need a nap tired, like OMG I could run screaming out of the house at any minute tired.

They don't tell you managing a young child with Type 1 will be all consuming.  Especially, a child that does not feel his highs or lows.  Life is a constant and never ending math assignment.  How many carbs are in that food?  Should I bolus it all up front?  Oh crud, his blood sugar is climbing in warp speed, how much more should I give?  It can go on and on and on.....24/7.  I am here....I am a pancreas.

But don't you have it under control?  um, say what?  There is no control with Type 1.  We manage.  We manage the numbers one number at a time and move on.  We analyze, we ponder, we equate, but there is no control.  Our bodies are constantly changing, moving, growing and we eat different foods everyday.  Put that into a little boy who never stops moving and well, you get what I mean.

His A1C at diagnosis was a whopping 10.5.  Last visit it was 6.4...  Amazing after the strip recalls and growth spurts.  His blood sugar is in range a whopping 70% of the time all thanks to Dex.

http://www.dexcom.com/

There will always be highs and there will always be lows.  Just the name of the game.  Pump sites will go bad, he will get sick, there will be ketones, there will be lows and scary lows at that.  But the thing I learned the most from the last two years...... type 1 will not win.  It can't.  We will jump, we will play, we will live.  It is hard, but until there is a cure, we have no choice.

I am so glad I can take care of my boy for now.  Someday, he will have to do it all on his own.  I know the burnout that occurs.  I pray he finds someone who will take care of him, who wants to learn, who is supportive.  I will always be there.  I will never give up.

Getting Ready for School

School.  OMG!  School has me crazy.  So much to get ready for.  School plans, training, meeting teachers, supplies.  The list can go on and on.

Not sure how I feel about it.  Still worried about my little guy as he is not feeling his lows yet.

Got to 35 today and Nothin, nada..... He was the same boy.  Scary!

Here is a letter I copied most of from somewhere on the internet.  Thank you again!

Dear Teacher/Counselor/Coach,

I wanted you to know that I have Type 1 Diabetes, and to let you know a bit about what this means to you as my teacher and for me as your student.

As you may know, Type 1 Diabetics must manually adjust our blood sugars because our pancreas doesn’t do that for us.  This means that:

• 10-15 times per day I’ll test my blood sugar to measure my blood glucose.  You might see me prick my finger and then dab that drop of blood with my monitor to measure it.   Testing is normal, and is needed to “manage” my care. 

• Each time I eat (even tiny snacks) I have to give myself insulin.

• If my blood sugar is high I feel horrible, have trouble learning, and might appear “checked out.”   After I test, I’ll give myself insulin in order to lower my blood sugar.  (Insulin will help me, but it takes at least 45 minutes to start to help…. It isn’t instant.) L

• If my blood sugar is low, I also feel horrible.  In this case I need to correct it by eating candy, juice, or another form of fast acting sugar.   So if you see me eating candy you can know that I’m feeling horrible and I’m working to improve it.    Correcting a low only takes a few minutes for me to feel better.  It’s much more instant than correcting highs.

• I wear an insulin pump and use the unattached PDM.  It isn’t a cell phone. J

• If I am acting unusual (groggy, over-quiet, inarticulate, out of focus, or if I fall asleep) please do three things immediately:
1) Ask me to test my blood sugar NOW or do so for me.  Call for help if needed.
2) If I’m low or unable, give me sugar.  Candy.  Juice. Soda.  Quick!    

3) Call the nurse and my parents.

I’m proud of my ability to manage this disease.  I’m totally healthy and have no diet or physical restrictions.  I am very shy still in managing my care and may feel uneasy talking to you about it.  Please be patient with me.  I would so love it if you could be discreet as possible.  I don’t quite know how I am feeling all the time and don’t know when a low blood sugar is coming on.  I really need your help.  I know we will make an awesome team.

Type 1 Diabetes is a big part of my life and it is important for me that you understand a bit more of how it works.

My mom is very open to talking about diabetes and is very willing to answer questions about type 1 diabetes or how I manage it.  Just ask.  She loves it when you ask.

Zach Dettmers

Type 1 Diabetic, Knower of Cool Diabetes Stuff, Your Awesome Second Grader

Remember to Breathe

Breathe....Breathe...and remember what to do.
I am not sure what is going on.  My little guy's pancreas is anything but textbook.  All is going well and good and whammo, D days "are you paying attention?"

We started out the day with the same old breakfast, toast and pumpkin butter with a tube of Greek yogurt.  High two days before, but not this time.

I will admit, I have NEVER had the CGM just say low, not only low but low with an arrow down.  It happened sudden and rapid.

Scariest part is he does not feel it, doesn't look the part or talk the part.  If we had no CGM, I shutter....I cannot talk about the possibilities.

He is alright, he got to have a frosting tube.  The frosting tube worked FAST.  Good to know.

Thank you Dexcom again.  Once again, your CGM saved my son.  Can't wait for your next versions.

"Just Keep Swimming"

I just read an entry for a blog by Tom Karlya at ">http://diabetesdad.org/2013/07/21/the-unfairness-of-life-moving-on/.


He posts what it is to mourn the diagnosis of type 1 diabetes. I too struggle with this. My son was only 6 when he was diagnosed. As he grows, he will probably not remember what it was like before diagnosis; free of shots, finger pokes, and all the Dr's appts.

I too, grieve the loss of an innocence part of his childhood stolen. The incredibly painful realization as a mother that one mis-step and bad things can happen; life altering bad things.... After my son's diagnosis last year, I got sick. I mean really sick. I had to go into the hospital twice a day for a week to get IV antibiotics sick. Stress will get you, let me tell you. There is nothing worse, than a mom who can't take a lifelong illness away from her child. Trying to grab more information..., then the horror stories online. What mom who one day ago, put her child to bed with not one care in the world, wants to hear about "dead in bed"!!!??? Not me, not anyone.

Grief, anger, anxiety, incredible sadness all took over, but not nearly as much as my determination. Type 1 diabetes will not win. It may get it's day where type 1 gets the upper hand, but it will not win! It is now one year later, I still grieve a bit every day. I notice when type 1 let's me forget for just a moment. I cry when no one can see and everyone is in bed. I cry when I look at his baby picture and tell him I am sorry honey. I am so so sorry.

This is not the life I wanted for my son, but it is his life. I do my best to not let him see the sadness I feel or the frustration when type 1 sucker punches us down. BUT....we get back up and fight harder. He will learn to manage and take on this beast. He will grow up strong, passionate, and loving.
Each day I am reminded to "Just keep swimming". Thank you Tom. So glad to hear I am not alone.

Diaversary

Today is the diaversary. Today, exactly one year ago, my sweet 6 yr old boy was diagnosed with type 1 diabetes. I knew something was wrong, months before. I could feel it, I just knew something was wrong with my boy. I didn't know what. Then, he started drinking ALOT, but it was HOT outside. Very hot... Then, he started going to the bathroom way to often. He would come downstairs in the middle of the night not really knowing where he was looking for the bathroom. We thought that was strange. Then, he puked in the car. Last straw, I made an appointment for the next morning. I remember looking at him taking a nap that afternoon before he was diagnosed, he looked like he didn't feel well, but he had just had a peanut reaction two days before. Little did we know, our beautiful perfect son would get this diagnosis, 7/6/12. A day I will never ever forget. How can a diagnosis this hard be so easy to diagnose? A simple finger prick, then the nurse came back for another.....I knew it then....but then again, I had NO CLUE. I didn't know what your son has diabetes meant. I knew that day, it meant we would head straight to the hospital, then to the Barbara Davis Center for training. Training that day was for survival. It was a Friday at 2 pm when we got to the Barbara Davis Center. Children's Hospital sent us right over. He was ok to be released, his ketones were not high. I remember asking what does that mean and not understanding what she meant. My husband lost his composure he was trying to keep all day. He wanted to know how they actually knew he had type 1 diabetes, all they did were quick blood tests and a simple finger prick. Why are we being taught to check our son's blood glucose 6 times a day (which by the way is far too few)? Why must we stick a needle in my son 4 times a day? I didn't understand. I didn't know type 1 diabetes. I knew of diabetes. Diabetes is not that serious, grandma has it and checks herself ever so often........OMG, I had no clue. Type 1 diabetes is an autoimmune disease. My Zach needs insulin pumped into his little body 24 hrs a day to survive. He must have additional insulin with every single bite he eats. It can be all consuming, painful (both for Zach and me), and heart wretching. There is nothing we could have done to prevent it. I have bargained with God, asked for him to let me take this burden. Yet, it is not mine to bear and it is. I feel my son's pain. I hurt when he hurts. I still kick myself for not taking him to the Dr. earlier. Nothing I can do about it now, but still.....if only. Not a battle I can win. I have been angry and fallen on the floor in devistation. Type 1 has no plan. We spend our life making plans. This image of my son's life is not what it was a year ago. I dread...hate....am in total anguish at him going back to school. He is hypoglycemic unaware now. Does not feel blood sugar lows which could cause seizures or death and turns off his CGM at school which could alert teachers to this low blood sugar. He is at a greater risk for celiac disease (which I think is already happening.) He is so young. It is just not fair. All this being said, I know my son has a bright future. He will grow up to be independent, wise beyond his years, kind, empathetic of others, have great dietary awareness, and go on to do great things. I just know it. That does not mean I am still not scared. 1 in 20 type 1 diabetics will die of hypocglycemia. It is just not fair. As we go on, today on this diaversary, I will celebrate hope. Hope for a cure. Try not to dwell on the sadness. Celebrate my Zach, he has gone through so much in this past year. A day to celebrate my little man and all we have accomplished. A year of type 1 management, without a trip to the hospital and great A1C is something to celebrate. Yet, there is always that threat. I am awake still tonight, watching and waiting....for a blood sugar to come down and it just won't quit. I am his mom and I won't quit. Diabetes will not win.

Happy 4th of July

We have a way of celebrating holidays in our family....something usually happens. Take last Christmas for example. Zach got the flu. We got the flu shot and the flu. Perfect. I was fairly new to sick day plans, but we made it through. No real ketones and no hospital stays. Huge! In type 1 diabetes land. Here it is the 4th of July. Zach has a typical everyday breakfast. Frozen waffles and milk. Easy enough right. Wrong, very wrong. Type 1 has another thing is store for us. He eats all is well and the CGM goes up to 200 ish. Normal for just after breakfast. An hour later, Zach is low. Ok, juice.....check...huh...bg just barely went down instead of up. Two packages of smarties later....hmmm, still not going up. WTH??? Zach gets a sucker now. Ok, bg is up over 100, we can head out. We are headed to my parents for their BBQ. The kids have a blast every year. They put out this huge inflatable slide and my Dad bought the kids a blow up larger pool. We get in the car and Zach is very irritable, cranky, not like him. Check him as the CGM will not go up.....ug, 63 and lower and lower....He is 85. Ok, but still.....More candy..... We get to my parents house and Zach still has about .5 unit on board according to the pump. I give him 17g more.... This should get us where we need to be. Wrong......15 min later 58. Come on. I was about to pull my hair out. Zach gets regular pop. Something that never happens. I have no idea what happened or why oh why he was falling so fast. I estimated we gave him 100 g of carbs to bring his bg stable. He didn't have that much carbs for breakfast. WTH. I don't know why. Type 1 had it's own agenda today. I shutter to think what would have happened had be been anywhere else. What if he was at school? What you don't know is my Zach is hypoglycemic unaware. He does not feel his lows and does not look any different. We had a ton of lows today and no one could tell, not even me. Now, that is scary. I can usually see it. Hypoglycemia can cause, seizures, loss of balance and motor control, loss of cognitive function, and death. Yep, crap......right? We have the Omnipod insulin pump. It is mighty fabulous. However, all insulin pumps have their quirks right now. Zach's gave us the tone of death this afternoon. It is the high pitched sweakey sound (I know you all thought of Christmas Vacation, lol) an Omnipod gives out when there is an error. In this case, occlusion insulin delivery stopped and we MUST change it NOW. Poor Zach has to stop playing again for a pod change. Then, our Dexcom bites it too for the day, dreaded....question marks and hour glasses. Signs of death there too. Sure enough, it never came back and smart me, I remembered to bring a replacement. Two hours later the CGM is back after losing it basically the whole day. Not a good day to lose reception. I am wiped. No sleep for the weary here though. It is 1AM and despite very correcting his blood sugar twice, his bg is now over 300 and climbing one arrow up per Dex. Thus, I must go and change the site (which just got changed as mentioned above........), get some new insulin out of the fridge to put in the pod because I am questioning this vial....Maybe it went bad. It has been hot. Needless to say, I must go. Another ketone check, another site change, at least two bg checks (pricking his little fingers), and a shot to bring down the bg to a normal range. I am positive those smores he ate tonight, did me in....sigh...That is another topic for another day.

We need a cure!

Please excuse me while I kick myself.

Ug.  Here it is 12:36 AM and watching his bg.  It is stuck around 250.  Why?  Because I accidentally turned off the basal rate for two hours.   I don't even remember doing it.  Caught it,  but still.  Kick kick. ...

It has been a long day to start with.   First,  pump had to be changed this morning right before school as I knew something was not right as his bg climbed fast after breakfast and no normal small dip as I corrected his bg am hour before.   Sent him to school with his cgm and prayed some insulin had gone through with his breakfast.   I warned school to be on the lookout.   Got the call 1 hr later.   High.   Since no ketones and I had changed out the omnipod after breakfast, correction.  Needless to say.  He had to come jome and stabalize.  It seemed to take the whole day to come down.  

Finally, good again and mom flubs it up. I am paying dearly now.   Time for another check and correction as I was leaning in the side of caution with my earlier corrections I don't want a night time hypo. 

Nite.......well, maybe