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.