I wanted this blog to be about my family's experience with my son's Type 1 Diabetes. My family is more than just diabetes, but I want this blog to be focused on how it affects our family. I hope other T1D parents find it helpful, and that my family and friends find it informative.

Thursday, March 22, 2012

And so it begins...

I've shared a lot about other people's frustration and stress dealing with T1D.  I have had it too, but the worry about blood glucose lows have yet to hit me. 

Until today.  Now to explain:

We are about 2 weeks into being a family with T1D.  Johnny's doctors have kept Johnny in higher blood glucose numbers for multiple reasons, but the over all reason is that if his blood glucose drops low it is can be very dangerous.  Our "target" blood glucose range for Johnny before meals is 100-200.  He has been below 200 twice since we have been home, usually between 280-400 (checking 4 times a day for 14 days = 56 checks... 2/56 isn't good).  Well 2 days ago the doctors called and after evaluating his recent 280-400 numbers they increased both his long lasting insulin (Lantus) and his fast acting insulin (Humalog).  The first day I didn't notice much of a difference.  Yes it was lower but still in the 250-300 range.  The next day the lowest reading was before bedtime at 190.  I have been instructed to get up at 2 am and check his blood glucose and correct it if it is low only (give him sugar).  Last night I tossed and turned most of the night anticipating my 2am alarm, wondering if it would be low, worried that 2am would be too late, basically like a nervous mom is expected to sleep.  My alarm went off at 2 and I shot out of bed and ran upstairs to check. 


Okay... 256 isn't even close to low.  YAY!  I feel good.  Too good.  I can't sleep.  I am now on a high with relief that he is okay.  I think it was close to 4am when I did finally go back to sleep.  The 6:30 alarm that woke me up next was unpleasant, but I got up right away.  We had a full day to prepare for.

Johnny's morning numbers were 250ish, great.  We had a quick morning and then it was off to Johnny's first day back to school.  (School is what we call his 2 day a week 1/2 day program at a local church.)  He missed 1 week being sick, then being in the hospital.  He missed the 2nd week because it was their spring break.  He missed the first day this week due to changing insulin and mommy wanting to watch him.  So today made 3 weeks since he has been to school, and when you are 2.9 years old... three weeks is long enough to start from scratch.  Drop off was a little tough, but by the time I came to get him 3 hours later he was having a blast and told me how much fun school was.  I was a little nervous today while he was at school about the "what if's."  What if he goes low and they don't notice?  What if they just think he is showing signs of a low and give him the emergency juice or skittles?  How will I know what really happens?  You see, his school is extremely loving and supportive.  I am a huge fan of how much care he gets from them.  Some parents are very concerned with what their toddler is being "taught" while at school but I kinda feel the opposite.  My child is smart. (I am not biased at all, right?)  He isn't a genius, but he is smart.  He and I do a lot of activities based on learning, and he loves it.  He can count to 20 perfectly and beyond not so perfectly.  He knows his abc's and can identify most letters independently.  He has a great vocabulary and is a very effective communicator.  He knows colors beyond red, orange, yellow, green, blue, or purple.  He knows many many shapes.  He is an animal whiz!  He knows about dinosaurs, their names, their features, and their diets (okay so that was dinosaur train... not me.)  My point is, at 3 years old I feel very comfortable giving him the education he needs.  What I want is for him to like school.  I want him to think of teachers as trustworthy adults he can count on.  I want him to WANT to be with other kids and be social.  I want him to learn how to share and take turns.  I want him to see how much fun he can have away from mommy.  I want him to feel that other people care about him.  This "school" has met every want I have. 


Now we have T1D....

This school does not have a school nurse (its not a school).  They are not going to take on the medical responsibility of testing him and counting carbs and giving insulin.  I don't blame them and for now I still want to do that for myself.  But they are willing to keep him in the program with some modifications.  1) The days used to be from 9-1pm which included a school provided snack, and parent provided lunch.  Now, I provide his snack so that it is 15 carbs or less and I pick him up at 12 before lunch.  2) I met with the director and all his teachers and gave them a basic run down of T1D.  They are not going to be testing Johnny during the day (and technically if he were home with me I wouldn't be either for those 3 hours).  They are really aware of how dangerous getting low blood sugar is for him, what might bring it on, and what are symptoms of it.  They have been instructed by me that if they suspect he is low, just give him 1 of the emergency snacks (juice, skittles, and so on) that I pack for him and call me to update.  I would much rather them be wrong and he have a spike, than for them to not give him something because the signs weren't 100% clear. 

So, we have a plan in place.  The school is completely on board. (Johnny isn't their first T1D kid) Our numbers look good... however I am a nervous wreck the whole time he is there. Combine with my awesome night's sleep... I have very little nerves left.

I keep busy during this time with business issues that needed to be addressed.  Before I know it, its time for me to head back to pick up Johnny.  He did great!  We get home and test for lunch, 268.  All that worry for nothing.  After all we BARELY increased his insulin.  By mid afternoon my pregnant body and brain are worn out.  Lucky me, my husband is done with our business early and comes home to take over for me.  He and Johnny leave to run errands and just to buy myself a little alone time I give them some of "MY" money (eh, its all my money right?) and tell John to take Johnny our for dinner after and have some father/son time.  Yay, peace and quiet... I am dead asleep in less than 10 minutes.  When I wake, it is 6pm.  My adrenalin rushes instantly because I know Johnny has probably had dinner.  I wonder if Daddy remembered to do everything. Did he record the numbers?  Did he look up the carbs correctly?  Did he feed Johnny enough?  Did the insulin shot go well in public?  Ah... the dang nerves again.  I call and John tells me everything is fine and they are on their way home.  Of course it is... John is a great dad... he can handle this.  Johnny is doing so well with his blood checks and insulin shots, I have no reason to think it wouldn't go well.  When they get home John tells me the numbers. 


128 before a meal!  My heart beats faster.  This is the lowest it has ever been since we were diagnosed.  128 might as well been 68 in my mind.  I can't believe he was so low.  I feel anxious that something is wrong.  I wonder if his pancreas is working again, I worry about dosing him for dinner at all.  I obsess over this for the next 2 hours until bedtime snack when I can check him again, 150.  OMG 150 and I am going to send him to bed?  He has never gone to bed that low, what if its too low?  I just know what kind of sleep I am going to get tonight.  If I thought it was hard to sleep last night, tonight will be awful. 

So here's the thing.  I am a very logical-straight-forward-numbers person.  All the numbers from the past two weeks give me ZERO reason to think he will be low tonight.  He has never been lower at 2am than he was at bedtime.  He has never dropped more than 30 points between bedtime and morning.  However this is my precious baby and logic has nothing to do with it.  The "what if's" completely man-handle the logic right out of my brain.  So here I am, 40 minutes after putting my little one to bed.  I am so tired.  I feel the punching and kicking of a serious wrestling match going on in my giant uterus.  I know the alarm is going off in 4 hours and 20 minutes.  I know I wont sleep well between now and then, and I know that I wont sleep well after and it wont matter if he is or isn't low... I wont be sleeping.  I should go to bed and try. 

Instead... Its milk and oreos time with the DVR. 

Nighty-Night All!

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