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.

Monday, April 23, 2012

40 to 600 in less than 24 hours

I would like to think I've handled all of this pretty well.  I haven't done the "Why him?" like I've been told to expect.  I feel bad when he tells me the shot hurts, but I know he needs it and it hurts less than he makes me think.  I make sure we still do our normal activities, attend play dates when possible, eat out when we want to, spend the day out at the zoo or park or shopping like before.  I really have tried to just accept this diagnosis for what it is and "get on with it" for Johnny.  Johnny deserves to feel normal and the more I baby and change how we do things because of Diabetes the less normal I am treating him. 

But he isn't normal... and the past 24 hours have really proven it to me.  I think Diabetes decided I was getting too comfortable with this and decided to just beat me down and teach me who's the boss.

I had a melt down today about it finally, and even though its passed and I truly feel better, just typing about it makes me cry all over again.  I am mad that its never going to end.  It doesn't matter how "right" I do things, I still have so much to learn and my learning curve is going to affect the health and well being of the most important person in my world right now.  He pays for my mistakes and "lessons learned," not me. 

So here's what happened:

Sunday we had a family over and BBQ'd burgers and played outside.  Johnny had normal if not high morning numbers before the BBQ.  About an hour into our visit, and an hour of lots of outside activity we started bringing out the food.  Johnny saw the cantaloupe and wanted some.  Does this matter to a non T1D parent?  Well for me I have to really think it through.  Is it snack time? Nope.  Has he been exercising more than normal for at least 45 minutes? Yes!  Okay then the answer is "yes my little 3 year old.  You can have that healthy snack of fruit."  But it doesn't end there... he can only have 15 carbs worth of it.  So do you know how much cantaloupe is 15 carbs?  Me either!  I have options of how to handle it.  Option 1) give him about a cup of melon and estimate it to be about 15 carbs.  My brain knows that 1/2 a large banana is 15 carbs and grapes are a little less than 1 carb per grape.  So I can see about how many grapes the melon would equal and its kinda the same size as the 1/2 banana... eh close enough we are going to eat lunch soon.  Option 2) Excuse myself mid conversation with my guest, make my hungry toddler look at the melon but not eat it while I look up how many carbs per ounce is in cantaloupe then go inside and measure it with my scale and then let him eat it.  Well... what would I do before T1D?  What would you do with out having a T1D?  So that's what I do, estimate a cup and let him eat it, keep chatting with my friend, and enjoying our day.  (First screw up of the day, by the way... but I will address them all at once.)

Lunch time!  Pre-meal reading is 198 (just after melon, but 15 carbs after that much activity isn't supposed to count.  Mistake number 2)  Johnny is so excited to be eating outside and to be playing that he eats less than half his normal amount.  I can't actually believe he is full and don't want to tell him he can't have more but it is time for his insulin shot.  He ate 12 carbs and gets 1 unit for every 23 carbs.  So that is 1/2 a unit... barely a drop.  I worry he will want to eat more in a few minutes, and he is only 11 carbs away from 1 unit.  11 carbs is like 1 cookie and 1/4 cup of milk.  In my head the melon is still out, and I made chocolate covered bananas so that will definitely put him over the 23 and he can have 1 unit.  Oh, he is also almost 200 and 1/2 unit is supposed to correct 50 points over 250 so I figure even if he doesn't eat the 11 carbs he will just go down an extra 50 points and be around 150.  I've made up my mind... ONE UNIT IT IS!  (Mistake number 3)  By the way, Johnny took a tiny bit of the banana and that was it.  Not even close to 11 carbs...

Our guest leave after 2 hours and Johnny is wore out.  He gets sleepy and I let him make a bed on the couch and watch a cartoon.  When I see him fall asleep I panic and test him in case he is low after all that activity.  (Which is crazy since I KNEW he was tired and was going to sleep.)  He is 133, yay!  My math was correct, that extra 1/2 unit just brought him down about 50 points.  I'm awesome!  I got this diabetes thing! 

He wakes up about an hour later and is super fussy.  Johnny is always Mr. Grumpy after naps so this isn't odd.  He is however asking for a Popsicle and then going back to sleep, then rolling over and asking for a lollipop, then Popsicle and then sleeping again.  That was a red flag.  I test him. 

40.  WTF??? FORTY!  I don't know what 40 means but I'm shocked that I didn't go into labor with how much adrenalin pumped into my system.  I yelled for John who was upstairs.  He never hears me except twice in the whole time we lived here.  Once when I almost killed our dog on accident by leaving her in the heat too long, and this time.  I must use a different voice that penetrates gaming headphones when I am panicking.  I am giving Johnny juice now and John runs downstairs.  Johnny is okay, he is sitting and drinking.  He drinks it in about 30 seconds.  Well, I'm supposed to wait 15 minutes to test again.  But my brain can't handle thinking I am just going to "see what happens." Johnny is asking for crackers now (it is snack time) and I don't want to give them to him I just want to give him straight sugar so I know he is okay.  I give him a 15 carb pack of skittles.  Those actually take him some time to eat and I get to 10 minutes and test him.  He is 144. Whew, safe.  It's frustrating that sure 15 carbs should raise him 50 points but that doesn't mean it always will so do I chance it and wait the 15 minutes and "cross my fingers?" Or, do I go nuts and hose him down in sugar like I did and watch him skyrocket?  And you know what... HOW COME WE HAVE TO DEAL WITH THIS CRAP AND CAN'T JUST BE LIKE EVERY OTHER FAMILY I KNOW WITH A 3 YEAR OLD?  (My first "why him?") 

He is fine from that point on.  Great, I do test him often though.  I didn't plan to check him at night because he was 288 at bedtime but happened to wake up at took it as a sign to check him, 240 something at 2:30am.  Fine... I can't even say great anymore.

I spent time yesterday going over each of my mistakes and "learning" from them on how to better handle this next time.  I feel good that I learned so much in one day.  I need to have pre measured options for my T1D baby when I am serving food.  I do when I leave the house, so I need to be doing that at home too.  Maybe not for everyday, since I can easily measure as we go... but when company is over or things are busy here I need to KNOW and not guess.  Because guess what... the 15 carbs of melon I thought he ate was more like 4-6.  And checking his BG right after eating it and thinking he was actually at almost 200 and therefor 1/2 a unit wouldn't be a big deal wasn't smart.  He was spiking... yes it would have come down but I don't know where his BG really was.  And giving 1/2 unit because he "might" eat something is wrong.  I can't suck it out of him when he doesn't eat so I shouldn't put it in him until he does.  Okay... LOOK how much I learned!  I am such the super mom huh?  I am going to NEVER screw up like that again.

This morning I woke up and planned to make the most of our day.  We are all home (Husband doesn't work Mondays.)  We get up early with Johnny and pack up our things.  The plan is to eat breakfast out, go get new glasses for John and I, and then go to the Dallas Children's Aquarium.  F Diabetes, I am not going to let one bad day get to me. 

We eat breakfast at a little diner.  I estimate his breakfast the best I could.  1/4 of a huge pancake, syrup, and chocolate milk.  I guess it to be about 48 carbs.  He was 132 pre-meal so I didn't want to under estimate and give him too much insulin.  I realize he at less protein than normal but it is what it is.  We head off to get our glasses.

The eye doctor isn't open for 45 minutes after we arrive.  We kill time walking around the big box store until the doctor is open.  Mommy starts to get really tired and decides to go sit and let Johnny and John continue into the toy section.  When they come back Johnny doesn't look right and asks for a lollipop.  That's my big red flag.  He is moving slow too.  I check him expecting it to be low again, figuring I must have over estimated breakfast... geeesh, how did I do this to him again in less than 24 hours?  But guess what happened this time...


Thats all the meter says.  Which means his BG is too high to read with this meter.  Which means it is over 600!  OVER SIX HUNDRED.  My eyes tear up.  This is just too much for me to handle.  What did we do wrong?  It must be that his insulin has gone bad.  I call the Endo right then and there in the store.  I leave a message for the on-call endo to tell me what to do.  I am assuming I will be told to give him more insulin to correct it, and water, and who knows... certainly not me... and certainly not anyone else who doesn't have a T1D toddler.  F this D!  (Yes I am swearing more at Diabetes now...)  The nurse tells me to check him for Keytons.  I explain that we are not home and I don't have the Keyton strips (strips he pees on).  She basically says, you need to check him as that is what is going to tell us if this is an emergency or not.  Well, we are at a store with a pharmacy so I buy a pack of strips, a bottle of water and head to the restroom.  No keytons!  Good... 1 good thing.  I am still waiting for the Endo to call me back but I know he is okay and we don't need to rush home.  John goes to get his eyes checked, which I am fine with and I let Johnny play in the small arcade that this store has while I wait for the Dr to call me.  When she does, I step out.  I can see him but am not actually in the room with him.  When I talk to the Dr, I see a woman with 4 kids go into the arcade.  Johnny is playing with her kids and I focus a little more on my conversation than on what he is doing... I am standing by the only door and can see the whole room so I am not worried about his safety.  Doctor says it has only been 1 hour since his insulin shot so she doesn't want to give him more, since his keytons are okay then he is fine and to just watch him.  If he isn't down to 250 in another hour and a half to call her back and if he shows any keytons to call her back.  I am kinda in shock... really do nothing?  How is he going to go from over 600 to 250 in the next 90 minutes.  For the first time I am frustrated with our endo team and feel like I was just given the standard answer and not really listened to.  The woman with her 4 kids come out and Johnny comes out with them, he is chewing on something.  I think, oh gross he must have found someones old gum or something.  I tell him to spit it out.  The woman tells me, "oh its okay, we shared our candy with him."  My heart sank.  I fought back the tears.  I couldn't even tell her that he can't have candy, that he is diabetic.... it wouldn't matter, it wouldn't fix it, she was being nice... and to be honest she was really nice.  I let Johnny go play again and called my dad (or he called me... its a blur.)

I lose it.  I can't stop crying.  This last tiny encounter with a very nice stranger put me over the edge.  Its not fair.  No one understands how I feel.  I feel like can't explain it to any of my mom friends either... they care, and they listen... I just don't have the words to explain how it feels to find out that someone gave him candy.  Its not like I am worried about calories or weight... its so much more than that.  Its so much more than I have found the words for yet.

Okay I test him again, 533.  At least he is able to get a reading after the candy... so it is coming down.
We go wait for Daddy.  Johnny is hyper and agitated.  Look, I was not a kid person.  Especially 3 year old boys... they are loud, crazy, sticky and dirty.  I get why the lady across from us is giving me the evil eye and I can tell she wants to tell me to discipline him for not sitting when I ask him to and for yelling just to yell and so on.  I get it... but heaven help her if she says even one word to me at this point.  I am ready to take my anger at this situation out on someone, so I just wait for her comments.  Good news, she stays quiet. 

We get home (I can't do an outing now) and he is 272.  I am shocked!  Happy but shocked.  I can't believe it.  It is now an hour after his "HI" reading.  Just 1 hour.  By lunch he is 130.  So technically if I didn't test him in the store and just tested him when I am normally supposed to I wouldn't have known.  I wouldn't have ever called the doctor, cried about a piece of candy, or stressed my body out where I might have gone into labor.  But how can you tell me not to test him? Yesterday's non normal test found a 40 reading. 

So what did you think about all day today?  I bet it wasn't Blood Sugar readings. 

(I know we all have problems.  I still stand by my original statement that I feel lucky that our problem has a "treatment."  However, today was the first time the little green monster named Envy showed up and reminded me that other people don't ever have to worry about this crap.)

No comments:

Post a Comment