Smooth Sailing on the High Seas

I have a habit of only posting to this blog when things are not going well.  Its been a while since my last post, and things are fine.

Johnny is out of school for the summer.  Which means POOL... well my version of the pool.  We have a great little backyard pool that Mommy, Daddy, and Johnny can hang out in and beat the heat.  Johnny loves it, we are in it as early as possible and sometimes our last dip is just before bedtime. 

While things have been "smooth sailing" around here lately, Johnny has been running high (BG of 230-350) most of the time for about 3 weeks.  His team adjusts his insulin weekly and they do it in tiny amounts to keep him safe.  Week 1 showed highs, turned in the numbers and got some instructions to LOWER his long lasting insulin thinking that he was actually going too low at night creating a "rebound" of higher numbers in the morning.  So we did this for week 2, still high... but now higher!  We turn in the numbers and are told not to change insulin doses yet because we also learned we were always rounding down, and that was wrong.  I wish I knew the nurse who TOLD us never round up, but whatever.  I was just frustrated because I am doing what their team tells me to do and its wrong, not a big deal except I have to wait a whole new week to watch the numbers and see if now that I can round up it will effect his sugars enough.  I waited 3 days, it didn't work.  So I called today and told them I didn't want to wait another week so we finally got our breakfast insulin dose increased.  That's a start.  I am happy about it.  Hopefully we are 1 step closer to getting him closer in range. 

But really none of that matters in our daily life.  We are happy and doing really well.  Again, its been smooth sailing.  I remember that first month, high numbers would drive me bonkers.  I worried constantly, now I just see it as a number to write down to better adjust our medication next time.  We are in a good D place. 

Johnny is getting ready to be a big brother very soon.  Our doctor has told us he wont let us go more than 5 weeks if we make it that long, so we are busy preparing the house as well as Johnny for another big life change.  He is such a help, he has helped me fold and put away his little sisters laundry, as well as wipe down his old baby equipment.  Johnny is learning to take on a little responsibility too.  We have a new "Star Chart" as we call it, not a chore chart.  He gets a star for doing age appropriate tasks such as feeding our dog and picking up his toys as well as for good behavior and habits like brushing his teeth, using the potty, and not yelling when Mommy is on the phone.  So far (2 days) it is working well.

Mommy and Daddy are working on getting Johnny on an insulin pump as soon as possible.  We attended our first class required by our Endo team, and we had the rep out to our house to get familiar with the device and complete the paperwork.  We have been approved by insurance and now are just waiting on the final approval from his Endo team.  We have another meeting with them next week and I think 1 more after that.  I really hope he can start in 2 weeks, and mommy is pretty good at getting what she wants. 

Thank you everyone for your constant support.  I love being able to openly share our lives with you. 

Observations

It has been a smooth few days around here as far as T1D goes.  Sure we have had a black eye, and a summer cold... but D has been playing nicely.  We are still adjusting dosages by the smallest amounts and maybe we always will.  I think that since his body is constantly changing, so will his doses (for a few years at least). 

I was watching a cute chick flick the other night in my "me time."  There was a 1 liner that really upset me, so much so I had to rewind it after a while because I couldn't focus on the plot for a few minutes after I heard it.  Here was the scene:
Man and Woman are on a date.  After dinner the man brings out a box of chocolates for the woman to eat right there at the table with him as dessert.  The woman says, "Are you trying to make me diabetic or just fat?"  They laugh, end of scene. 

Okay, so I get it... pre diagnosis I couldn't have cared less about something like this.  The reality is that 90% of diabetics are type 2, not type 1 like Johnny.  Its clear to science that being overweight is a big risk factor in developing type 2 diabetes, so I understand the line.  Doesn't make it right, to laugh at type 2 diabetes but my point is I "understand" the relationship between being fat and type 2 diabetes.

The reason I am upset is because all of pop culture that ever discusses diabetes seems to relate it to an unhealthy lifestyle.  So Johnny's teachers, peers, and strangers who see him injecting insulin have been told over and over again by our culture, that he brought it on himself.  Its his fault (or mine), and he should just eat better. 

Being fat also increases risks for a lot of other diseases but for some reason those are too sad to joke about.  Being overweight increases my risk for breast cancer but that wouldn't have been a funny line in the move.  "Are you trying to give me breast cancer or just make me fat?"  Not funny.  "Are you trying to give me hypertension or just make me fat?"  Still not funny.  "Are you trying to give me sleep apnea or just make me fat?" .... "Are you trying to make me have a stroke or just make me fat?"  Nope, still not funny.  But, "Are you trying to make diabetic or just fat?" sounds much more like they go together and we can laugh, cause clearly diabetes is an okay disease to make jokes at. 

Lines like this down play the seriousness of my son's disease.  Lines like these are why people (including myself before I joined the D world) think diabetes is simply treated with insulin and not a big deal.  Lines like this is why it is so hard for others to understand that today is just not a good day for me as a mother.  If my son had a disease that no one laughed at, that was viewed just as serious as other auto immune diseases, then maybe I wouldn't have to explain why I can't sleep at night because I worry about him.  Maybe people wouldn't think I am exaggerating when I say, my son is on daily life support that I provide in the form of 4-5 injections a day.  When I say I am stressed out, they would understand that I am constantly thinking about his health, his blood sugar, if he is too low, if he can eat something, if he NEEDS to eat something, if he can play outside, if he finished all his snack or just gave some to the dog, if it is safe to leave him with a sitter, if it is safe to send him to his grandmas, if he can handle being hooked up to a computer 24/7 at this age or if we should stick with 4-5 shots a day... and that I worry about these things because they are actually a matter of life and death.  Kids do actually die from the disease that Johnny has.  Instead, society thinks if you eat too much chocolate you will get fat, or if you are lucky, you will just get diabetes. 

(I know that all moms of kids with special needs must come across this at sometime and that really, no disease or difficulty our children face is "safe" from being made fun of or down played in our pop culture.  But now I am a D-Mom, and this is the topic near and dear to my heart.)

To my friends and family who I know read this and offer support.  Thank you!  I like to think that you are on this journey with me.  As I learn more and more about this D world, it feels so good to be able to share it with you.  This observation is just one more thing I felt like sharing with the many of you on this journey with me.

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.

My Pump Fantasy

Well we are 9 weeks into being a T1D family.  I am both surprised it's been that long, and also shocked that 10 weeks ago we didn't have a clue it was coming. 

Numbers are more stable at meal times, the times that doctors want me testing Johnny.  According to the excel sheets he looks like we are managing his diabetes well.  But I don't feel that way.  The issue I am having is that between the times we are "supposed" to check Johnny's blood glucose, he can have HUGE spikes in his BG.  When he spikes it makes him agitated and irritable.  Like 3 year olds need a reason to be difficult, he is practically impossible to be around when he is high.  If I discipline him for all his actions when he is high, he would just sit in time out the entire time, multiple times a day.  He is mad, yelling, demanding, defiant, and sometimes flat out mean.  Yet because his numbers are correct 4 times a day we technically are doing well???  It isn't working for me, and that is selfish because the truth is it isn't working for him most importantly! 

So what do we do about this?  I am not sure but I need to find out.  I have guesses but none are based on medical advice so until I see his Endo about it Thursday I will just keep an open mind.  We had to lower his long lasting insulin a few weeks ago because he was waking up too close to hypoglycemic numbers.  Maybe there is another isulin option that will work better during the day and not at night so that he stays lower during the day and doesn't go low at night?

Or....

The Pump. 

http://www.animas.com/animas-insulin-pumps/onetouch-ping

I don't want to see the pump as a magical device that is going to solve all my problems, but it sure sounds like it will!  I was hesitant to put Johnny on a pump until he was older because I wanted him to really understand what it is and why he should be happy to do that instead of multiple shots.  But, now I don't know if waiting is really what is best for him.

Here is a short explanation of what "I" understand the pump to be.  I could be wrong, and will find out more in a few days.
1) It replaces the need for injections of fast and long lasting insulin by providing small doses of fast acting insulin in smaller doses all day and night, with the ability to release larger quantities as needed when carbs are consumed.
2) Johnny can eat whenever he is hungry.  He will not need to wait the 2 hours between meals and snacks.  If he isn't hungry at snack time he can skip it with out going low,  (Currently, if he skips a snack because he was napping, playing, or just didn't want to eat he will be too low by meal time.)
3) Because the pump is always connected to him we can give small corrections of insulin ANYTIME he is high, like these between meal spikes! 
4) We can disconnect or adjust his background insulin to be less when he is or has been very active.  Often when I give him his back ground insulin now, I have no idea that later that afternoon he will be swimming or playing hard at the park, it is so unpredictable.  But with the pump, the background insulin is giving throughout the day, so I can adjust it daily depending on his activity.
5) Less intimidating for others.  What I mean is I know the thought of watching Johnny makes other people nervous because of the needles.  No one that doesn't have to give multiple injections to a toddler really wants to sign up for that.  However, reality is that John and I are going to need to be able to count on others to help us take care of Johnny.  He will need to go to school and not have mom show up for each meal and snack.  He will need to be able to play at a friends house, or visit grandma, or stay home with a baby sitter.  I think having a pump, a small computer that his caretaker just types a number into is a lot more attractive to people than an injection is, and therefor will create a wider support system for our family with less room for errors.  Maybe I am wrong, but it makes sense to me.

There are downsides to a pump, however I really haven't met anyone who didn't think life on the pump wasn't much easier to manage than shots... especially mothers of T1D toddlers.  I think we are heading down that road.  What I know for sure is that all the moms have warned me that it is a very rocky start.  Lots of bad numbers for 4-10 weeks while the correct insulin is worked out (mostly trial and error) so I need to be mentally prepared for that.  I remember that was really difficult to handle with Johnny and we only experienced it for about a week.  Knowledge is power though, so if I KNOW to expect it... I hope I will handle it better. 

Fingers crossed that all my pump fantasies will come true.

Aspartame

This post is mostly about mommy, but I swear it does tie into T1D.

With a child having T1D, it has changed some of the foods that are consumed in this house.  Meals are basically the same as pre diagnosis, other than I try to push protein first before fruits and veggies to keep him stable.  However, for our family, liquids have been the biggest change. 

I know that MANY families serve their kids 2 options, milk or water.  I actually was raised in one of those families.  My husband and I however always also allowed diluted juice with out moderation.  When I say diluted, I mean in 8 oz maybe 1 was juice and the rest water.  It actually tastes pretty gross this way but Johnny liked it so we allowed it, whenever he requested it.  However now that we are diagnosed we were advised by the DOCTORS and NURSES to offer crystal light or other sugar free drinks to avoid the carbs.  I didn't think much of it and started offering crystal light instead of the juice but still diluted just as much.

(Disclaimer... I am not a doctor, I have not done ANY research for facts to back up the rest of this blog.  Take it for what it is, my personal experience and what I concluded from it.)

Having all this Crystal Light (aspartame) in the house it was just a matter of time before I started drinking it.  I typically stay away from it because it causes me to retain water and the last thing a 30 week pregnant mama needs is more swelling in my feet.  However, one of the flavors I bought for Johnny he didn't like, so I thought I will drink it instead of "waste" it.  (This is stupid logic since it is cheaper than the cost of the fruits and veggies that go bad each week in my fridge because I don't get around to eating them.)  So I started having some with dinner as a nice break from water but with out the caffeine of soda or tea.  It's pretty tasty stuff.  So I started drinking it while making dinner too.  Then I would have it starting at lunch, and soon after it was all I drank all day when I was home.  About 5 days into this new habit of mine I was having a very difficult time in my life.  It was during this time that I wrote my previous blog.  I was an emotional wreck.  I was beyond stressed out in all aspects of my life.  How was I going to care for Johnny and his diabetes like this FOREVER?  How was I going to give any attention to a new born when my whole day revolves around Johnny's blood sugars?  How was Johnny going to survive if I did let some things slide so I can give attention to Jocelyn when she is born?  How am I going to hold 2 small businesses together while raising a newborn and a T1D 3 year old?  How were we going to be able to continue on with our life?  I was drowning in my own fears and anxiety.  I started researching anxiety and found that 25% of mothers of toddlers diagnosed with T1D are also diagnosed with post traumatic stress disorder with in a year of their child's diagnosis.  I honestly felt I was well on my way to this.  Finally one day, I couldn't stop crying.  I couldn't answer my phone, I couldn't deal with my employees, I couldn't talk to my mom and could barely talk to my husband.  I actually cried all day, about EVERYTHING.  I finally talked to my mom and said I don't understand why I am like this.  My life was just as complex and difficult last week and I was fine, so why am I freaking out this week? 

Then it hit me!!!!!

My mom lived with me in Texas for the first 2 years of Johnny's life.  She is a cancer survivor and an extremely hard worker.  So when she started acting funny when she was living her I had to get to the bottom of it.  She was paranoid about everything.  Jumping to conclusions about me not wanting her around, she thought she had cancer again, she was fearful of the weirdest made up situations it was crazy.  Finally I started noticing that she would drink 10-15 of the individual servings of Crystal Light a day!  I told her she couldn't live with me and drink that stuff because it was making her crazy.  I actually threw her "stash" out which might have been 100 different packets in multiple flavors.  Oh and guess what, she was fine within a week. 

When I brought Crystal Light back into the house after Johnny's diagnosis, I remembered this but knew that Johnny wouldn't drink even 1 packet a day with how much we diluted it.  I really didn't think about myself ever drinking it.  But now that I am thinking of it, I am drinking a TON of it.  I immediately stopped drinking it and in 48 hours I was back to my old self. 

I am going to provide 2 links.  1 for Aspartame, and 1 that feels the side effects are real. Read them and make up your own mind.  For me, I experienced first hand the symptoms and feel it is directly related to Aspartame. 

http://www.aspartame.org/aspartame_facts.html

http://www.sweetpoison.com/aspartame-side-effects.html


Why is this on my blog regarding life with T1D?  A couple reasons... what if I didn't dilute this stuff and let my kid drink it all he wants?  My kid would be craaazzzy!  I wouldn't suspect the aspartame since my doctor said to drink it (he didn't say at the quantity I was drinking though, lol)  What if I didn't realize the connection.  I no doubt would have gone to my doctor and been put on anti anxiety meds, depression meds, or a combination of them.  My hope is one day, someone who is in my shoes, might read this and just try eliminating it from their (or their family's) diet to see if it helps them.  (Disclaimer: I am pro medication to treat ALL chemical imbalances, anxiety, depression, bipolar or any other illness.  I fully support everyone in doing what they need to do to live a happy life.)  One day I might still need those medications, but this week I just needed to cut out aspartame. 

So is it odd that I still drink diet soda?  Ya, I guess it is.  The difference is I have 0-2 a day instead of 6-10 glasses of Crystal Light.  Is it crazy that I am still going to let Johnny have it?  Eh, I guess so but again he is drinking a small amount.  If I see in the future this becoming a problem, then I will absolutely toss it all and never look back. 

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...

"HI"

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.)

First Sick Day part 2

After breakfast yesterday, Johnny seemed to want to watch cartoons on the couch and not much else.  By lunch however he was fine!  He did nap, even though we didn't do anything but stay home.  Typically he only naps after a lot of activity. 

But the main point of this post is...

He was STABLE all day after breakfast.  I am so lucky these days in that most of the time he is very predictable. 

He woke low at 69, and after 15 carbs shot up to 168.  After breakfast and his morning insulin he was 310 2 hours after eating (pretty high but I do not correct highs between meals for now.)  By lunch he was 164, dinner was 174 and bedtime was 143.  Whoohoo!  He woke this morning at 140.  I couldn't be happier.

Now the next time he gets sick, truly sick at least I had a little glimpse at what to expect.  We test for keytons, we have full sugar and sugar free jello stocked, we have all the goodies.  I learned I can give tylenol fine, and to always give his background insulin.  So this was a nice trial run before the "real thing."

Thank you everyone for reading and for thinking of us yesterday!

Oh, side note.  My gestational diabetes was wacky Wednesday night until yesterday.  Nothing crazy just on the highest side of acceptable.  I think mine was like that due to stressing over Johnny.  Interesting how much stress and nerves impact our health.  (FYI highest side of acceptable 2 hours after dinner was 119, fasting was 103, 2 hours after breakfast was 121.  The rest of the day was in the 70s & 80s and today's fasting was 88.)