1 year diversary


A year ago on March 18, 2013, our lives changed forever.  We took Cole to the doctor thinking that he was going to be treated for some common illness; little did we know what was happening.  Cole’s blood sugar at the doctor’s office was 483.  The doctor informed my mother and I that Cole needed to go to the ER and she was calling for an ambulance.  I still had no idea what was going on.  I called my husband and told him and then my dad to have him bring extra clothes since mine and Cole’s had throw up on them. 

On the ambulance ride, the paramedic asked me “you know what is happening right” to which my response was “no”.  I don’t know if I was totally clueless or if the shock value hadn’t worn off yet, I mean I was riding in an ambulance with my 13 month old son.  The paramedic then said “well I can't officially diagnose him but they are going to tell you he is diabetic."  “Oh” was the only response I could give.  Now I will just claim ignorance.  I had no idea what that meant.  Sure I have heard of people that were diabetic that needed to exercise and eat right, some could even take a pill to help manage it (type 2).  I also have a friend that was diagnosed recently and I knew he had to take shots of insulin, but that was about all I knew about diabetes.  Boy was my world about to change.

At the hospital the first night was rough.  Cole was out of it, thankfully I guess.  They had to poke him over 20 times to get 2 IVs started in him.  One for fluid and one for insulin.  Over the next day or 2 Cole begin to act more and more like his cheery self.  He was smiling and laughing again, but little did he know his world was going to be completely different now.

Cole started with 4 shots minimum.  3 shots for each meal (we were doing carb free snacks so no extra shot required) and 1 shot of long lasting insulin at night.  The first insulin he was on he was allergic to.  Go figure poor kid.  It was causing a rash at his injection sites.  We switched his short acting insulin which appeared to work better.  The night time shot then turned into a night time shot and a morning shot…. Now up to 5 shots minimum.  Poor guy couldn’t catch a break.  We have since switched to the pump.   Cole now wears the Medtronic 530g pump with Enlite CGM monitor.  This monitor checks his blood sugar every 7-10 minutes.  This has been a great tool but sometimes really inaccurate.  The pump has been great.  The first time that Cole asked for milk randomly during the day, I almost cried realizing I could now give it to him without having to give him a shot. Try explaining to a one year old that if he wants milk you will have to give him a shot afterwards.

During the year Cole has gone from 5-7 injections a day to 1 poke for a site change for his pump every 3 days and 1 poke for his CGM site every 6-7 days.  Now I will say these pokes are much more invasive then his injections.  In the beginning Cole would take his shots like a champ, but towards the end before we switched to the pump we had to hold him down as he cried and fought us.  The pump seems to be easier for him in that aspect.  For his pump site changes, sometimes Cole will walk in and lie down and let us do it with no problems.  Other times we call him into his room and he turns the corner and sees what we are doing and runs the other way screaming “I don’t like it”.  He will cry and scream “help me momma”.  Breaks my heart.  The other night I had to leave the room because I started crying.  He’s 2 now and has a lifetime of this.  This will never get better.  This will not go away.  He will always require multiple shots or his pump to stay alive.  There is no break for him.  He can’t have a piece of candy because he was good at the doctor, unless we check his blood sugar and he’s low anyway.  He can’t go for ice cream after a dentist appointment for being a good boy getting his teeth cleaned, unless we check his finger and give him insulin.  He can’t eat candy until he’s sick on Halloween because that’s just what kids do.  He can’t get tons of candy in his Easter eggs or basket because that would also require insulin and a finger poke. 

This year on Valentine’s day I watched all the kids at the school I work at.  They were all giving each other candy as gifts and walking around eating candy without a care in the world.  I actually had to go to my office because I could feel the tears coming up.  Cole can’t do this… he can but it greatly affects his blood sugar.  If he eats it with no insulin then his bg level will go up.  The higher Cole’s blood sugar is for extended periods of time the more likely damage will be done to his organs. 

Lots of people keep telling me that at least he got this when he was young so he doesn’t know any better…. I don’t know how I feel about that.  Cole knows nothing expect for finger pokes, needles and pumps.  How sad is that, that Cole will never experience a normal childhood.  He will never be normal.  He can’t run and play without us wondering if he’s gotten too much exercise and if his blood sugar is dropping.  He can’t play outside in the heat without us wondering if his sugar is going to high from the heat or if his insulin in his pump is going bad because it’s too warm which will in turn cause Cole’s blood sugar to run high because the insulin isn’t as effective.  He can’t climb on things without me thinking “oh my God he’s going to rip out his pump”.  He can’t play with friends without me thinking “I hope they don’t pull on his tubing and rip out his pump site”.  He can’t run around without pants or shorts on because he does rip out his pump site.  He can never walk around empty handed when he is older because he will always need his supplies (meter, meter strips, insulin, food for a low, syringes, extra pump supplies, alcohol wipes).  All things needed to keep his little body alive for THE REST OF HIS LIFE. 

It’s a lot to deal with.  I know my emotions are a roller coaster no telling what Cole’s are.  He’s doesn’t even know what is going on and what he has to deal with for the rest of his life.  At some point he will be able to verbalize how being low or being high feels, or how being diabetic makes him feel.  I kind of dread that day.  I can only imagine he’s not going to have good things to say about it.  I wouldn’t have anything good to say about a disease that I will have for the rest of my life that requires me to receive insulin whenever I eat carbs.  How horrible would that be?  And it’s not like he got it half way through life, he’s going to live with this for his WHOLE life, minus the short little 13 months that he got to be a normal baby. 

For a year now I don’t think I have slept through one night completely.  We wake up every morning at 2:00am to check Cole’s blood sugar.  We were informed that 1 in 20 kids like Cole will die in their sleep when their blood sugar drops to low and no one knows that it needs to be corrected.  I don’t think I will ever sleep through a night again.  When he’s sick we have to check him every 2-3 hours.  If he’s low at bedtime then we normally check him multiple times through the night as well just to make sure he’s not dropping again.  The other night I checked Cole’s finger before I went to sleep.  His bg was 85.  While normally that would be a good number it’s bad at night.   I went to get him juice and put the straw in and sat by Cole, who was still sleeping.  I told him “hey buddy I need you to drink a little juice”.  Cole didn’t even open his eyes but muttered “ok” and opened his mouth.  I put the straw in his mouth and he drank several sips.  It was so sad that this is his life and at the age of 2 he’s already accustomed to what needs to be done. 

For now we just live our lives day to day and are thankful that our doctor caught this early and that Cole is alive and with us.  Cole continues to smile and laugh like he has no cares in the world.  Cole doesn’t seem to be letting diabetes slow him down, I hope he continues with his carefree attitude as he gets older and begins to understand what is going on. 
 
As for me, I am sure I will continue to have my breakdowns especially if someone talks about ice cream (read early blog), but we are doing ok.  We are thankful that Cole has a disease that can be managed.  Cole can and will still live a long, happy and healthy life if I have anything to do about it and for now I do because I am Cole’s pancreas aka mommy


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