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.

Wednesday, May 9, 2012

Everything I thought I knew has been wrong.

9 weeks ago today I found myself with a sleepy 2 year old boy at 9am, and thought how odd he was acting.  I was waiting for the flu to kick in for 2 days, as he was acting "off" during flu season... but 2 whole days and all that was happening was he LOOKED awful and was sleepy.  I am so glad I just took him in to the doctor, I truly believe if I waited just 1/2 a day more we might have lost him. 

When I was given his diagnoses of Type 1 Diabetes I had a lot of assumptions for what that would mean.  All of them have been wrong by the way.  I thought I would share some with you because I am sure you have them too, or did 9 weeks ago.

I assumed that Johnny would be on a low carb / low glycemic index diet for the rest of his life to be healthy.  Things like pizza, cake, even crackers would be cheating and should be avoided.  However, this is very false.  Johnny can eat all foods that a non T1D kid would eat.  Healthy options are best, because they are best for all toddlers.  No restrictions at all.  (Good thing to be wrong about)

I assumed that going on outings like the park or grocery store or play dates wouldn't change at all unless it was during a meal time.  However, I now bring with us EVERYWHERE the following: Insulin Pen, Pen Needles, Alcohol Wipes, BG Meter, BG Test Strips, Lancet device, extra Lancet, emergency injection of Glucagon, suckers, skittles, juice box, and keton test strips.  Of course this is in addition to what we needed to bring for a normal 3 year old, diapers, snack, sippy, change of clothes, and a toy.  By the way, we can't leave these supplies in the car at all or they will go bad and cost a lot to replace.  (We did this once, FIVE minutes in an un-airconditioned car and the insulin went bad.)

I assumed that Johnny's behavior wouldn't be changed because of diabetes unless I changed how I treated him.  However, I was extremely wrong.  There are times of the day that Johnny is his old self, he is happy and loving and playful.  Currently I have about 4-6 hours a day of a different Johnny though.  This Johnny is aggressive, difficult, defiant, stubborn, hyperactive, 0 attention span, and can be mean (hurts me to say that about my own child).  This behavior starts about 45 minutes after a meal and lasts 2-3 hours then he returns to his other self for another 2 ish hours until the next "mealtime" that causes his blood sugar to rise and spike so high that he is miserable.  I have said in previous posts but will repeat it here.  He is technically under control as far as medical opinion goes because at meal times his numbers are in his target range of 100-200.  What is happening though is after meals he spikes SO high (typically 300's but we saw as high as 600+) then the insulin does its full job and brings him back to range by meal time.  I don't know what it feels like to have your blood sugars rise and fall so much so rapidly.  I don't know what it feels like to have blood sugar in the 350s.  What I do know is that when Johnny is experiencing these highs and drastic swings he is such a different kid that it must be miserable.  I have also become very deterred from taking him out of the house during those times.  I don't want to deal with this version of my son in public.  To say he is extremely difficult to manage is an understatement.  I will still take him to activities alone, say the park for example but there is no way I would try to run an errand like the grocery store during this time of the day. 

I assumed that having T1D would mean that at breakfast lunch and dinner I would be presented with a math problem using his current blood sugar reading, the amount of carbs he ate, and his insulin and that was ALL I had to do to keep him healthy.  Other than 4-5 shots a day, life would be exactly as it always was... I just had to give his body insulin at meal times since he doesn't make his own.  I could handle that.  However.... I couldn't have been farther from what my reality was ACTUALLY about to be like.

I wake up on edge daily wondering if my little boy will also wake up. Or did I miss a fatal night time low while I was selfishly sleeping.
I feel my heart beat just a little faster when he sleeps in beyond his normal time.  I don't let John leave for work with out waking Johnny up because if something is wrong with him I can't be here alone.
I sometimes hold my breath when I am waiting for the meter reading, not always but when Johnny is acting low... how low is it going to be?
I check his BG at the normal times (morning, meals, and bed time snack) just like the doctors told me.  I also check if he falls asleep, acts fussy, asks for sweets, when we get to an activity, 30 minutes into the activity, after activity, every hour after heavy activity, before John and I go to bed while he is asleep, at 2 am if our bedtime check wasn't above 200.  If he has a low reading (which we have caught a low reading during each of those "extra" checks listed above) then I have to check him 15 minutes after treating the low, and repeat if it isn't high enough.  The thing is checking BG isn't a big deal, he doesn't mind it, and he lets me do it all day if I want... but the point is WHY I check it.  If I check 10 times a day that means that there were at LEAST 10 times when I worried that this might be the time Johnny is low, going low, or might need the emergency shot.  It doesn't matter how rational it is that I feel that way, it just is.  My anxiety about my 3 year old state of well-being is CONSTANT.  It is draining.  I wish it weren't justified, I wish that I was over reacting... but multiple times a week I catch a low testing him at one of the times other than the 4 the doctors said to check at (meals and bedtime).  Just yesterday Johnny feel asleep for a nap in the afternoon on the couch.  I checked him and he was 94.  94 is low, but technically it is safe and not something I should treat.  I KNEW he would go lower but I don't want to jump the gun and felt I would follow doctors suggestions and leave him be.  30 minutes later I test him in his sleep and he is 64.  (What if I waited 1 hour to retest, would he have been 62 or would he have been 34?  The stress of not being able to predict how his BG will react is this weight that gets heavier for me every day.  It may not be that heavy, but I never get to put it down, it is with me everywhere I go at all times.)  64 is also not life threatening, its not even close to the lowest Johnny has been but I still have to treat it.  Other toddlers could nap, but this one has to be woken up and given a fast acting carb, we choose to use skittles.  When I wake him he is scared to death of me, kicking and hitting me trying to get away from me while at the same time frantically calling "mommy" in a panic.  Was this because I woke him from deep sleep or because his BG was dropping?  I don't know, but it breaks my heart to hear him in that kind of distress and either way, if it weren't for Diabetes it wouldn't have happened.  It makes that weight I carry just a little harder to hold up during these times, but I do.  Once Johnny was fine and happily eating his skittles and watching Dinosaurs, I leave the room to cry.  Its the only way I know to let it out.  Again, I have a lot of supportive people in my life so it isn't that I have no one to talk to... it is that I don't have the words to convey my emotions to them, which is totally crazy for me. 

I wonder how I will ever let him be a normal kid.  (Oh I will, I just haven't figured out HOW.)  How the heck am I going to let him ride his bike 2 blocks to his friends house, even if his BG is fine when he leaves?  I have seen it drop 90 points in 1 hour.  If he gets too low, he mentally might not be able to process that his is low to fix it.  How will I let him go water skiing at 16 with his best friend and their parents?  (Actually, maybe I shouldn't let this one happen.  Growing up in California I can't believe how many "critters" live in the Texas lakes.  It might not be Diabetes that gets him water skiing... it might be those alligator/crocodiles... I don't know which... the green things with teeth they find occasionally in the lakes here.)  How will I let him attend a birthday party while in grade school with out me?  Trust me I will!  He will get to do EVERYTHING he wants to do that other kids get to... but for now, it scares me to death to think about.

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