Category Archives: Insulin Pumps

Advocating for your Type 1 Diabetic Child

IMG_1250The day my son was diagnosed with Type 1 Diabetes, I became his biggest supporter and his advocate. I was determined to make this seem “normal”, familiar, less invasive than it inevitably was.  Yet advocating for your Type 1 Diabetic child is easier said than done.

Carter was diagnosed when he was 17-months-old, which was bittersweet. On one hand, he was so young that essentially this way of life would be all he knew, yet the terror that invaded me was numbing. He was so small, so fragile, and I didn’t know how to get through this catastrophic event, especially since I knew nothing about Type 1 Diabetes prior to his diagnosis.

I have found, that is the norm, most know not much about the autoimmune disease that affects more and more people each day. Type 1 Diabetes has been on the rise and the reasons as to why, remain a mystery. My personal journey, compelled me to educate when I could, mostly in an effort for my son to grow up in a world that knows more than before about what he carries so bravely each and every day.

Everyday is a new opportunity to educate those around us, those who know us, and especially those who are strangers. I have checked Carter’s blood in aisles in the grocery store, in line at Disneyland, in restaurants, basically anywhere and everywhere it is necessary. I also dose him anywhere and everywhere.

We recently were on vacation, and while waiting for our food, my children had made friends with a boy who was running around the grassy hills, he too was waiting for his meal. The boy was around 5-years-old, sandwiched nicely between Ashleigh’s six-and-a-half-years, and Carter’s four. The kids ran around and played for a good 10 minutes before both tables food arrived.

The boy visited our table often throughout our meal, and happened to be standing right next to Carter when I pulled out the shot of insulin and injected him. The little boy wretched back in panic as I dosed Carter and screamed, “What are you doing!?” I calmly explained that my son was a Type 1 Diabetic, that his body doesn’t make insulin anymore and he needs to inject it to eat and to stay alive. Though still affected, the boy seemed to understand.

Every action is education, my husband pointed out how I scared that little boy and my response was that I wouldn’t hide and shame our son in dealing with his condition. At the end of the day, those around us need to adjust. It can be done, it has to be done. I will never adhere to society and how uncomfortable those around may be, when my son’s life is on the line. THIS is our normal, this is what my son does to live. I am proud of his daily sacrifices to live and each poke, whether it is MDI (Multiple Daily Injections) or his Inset site changes for his pump, is a deceleration of his survival.

I had a brief conversation with the boy’s mother, and she was eager to quickly learn what Type 1 Diabetes meant and we discussed the signs. Small victories, as I advocate for my son. Spreading awareness is the most important tool we have to assist those in understanding this disease. Allowing those to see what our hero’s endure, is the first step in tolerance, a bigger step toward compassion, and an overall guide in breaking the perception that surrounds Type 1 Diabetes.

Barely Hangin On

Carter 4. 2016I’m not quite sure what landed me at this edge, feeling like I am barely hanging on. In a way, it feels familiar, like I have camped out here before, frequently.

Maybe the gateway to this campsite is illness. Any sickness that Carter contracts brings an anxiety that is difficult to describe. Most minute illnesses we get through without any issue, then there are those that land my son in the emergency room. This past Thursday was one of those times.

We had been battling the stomach flu, it began with Natasha, my 11-month-old, worked its way to Ashleigh, my six-year-old, and finally latched onto my three-year-old Type 1 Diabetic son. Both my daughters threw up twice, replenished fluids and rested and recovered within a full 24 hours.

Carter, began throwing up at 8:00 am and by 6:00 pm he had thrown up 8 times. He couldn’t keep anything down. It was at that point that I called the endocrinologist. Although his blood sugars were good, I could see the beginnings of something brewing. Dehydration, Diabetic Ketoacidosis (DKA), when Carter’s eyes started to look sunken in, I knew it was time to take him in.

Lately, I feel as though I am starving for mercy.  It has felt like one thing after the other as I struggle to hang on to the edge of the cliff I fell off of three long years ago.  Watching my son battle Type 1 Diabetes has been humbling, heartbreaking, and unequivocally stressful all at the same time.

I am tired of the guess-work that it requires to keep my son alive.  I hate that I can look in his eyes and see that he’s heading toward a low, or a high blood sugar, yet at the same time I am grateful.  Grateful that through immense trial and error I now know how to see it in his demeanor before it strikes.

I’m sad that the hospital is a close comfort, because I know that they have everything at their disposal to save my child.  I hate watching my son be brave for all the pokes, all the site changes, all the IV’s, and all the scar tissue which is evidence of his condition.

Being on the brink of a breakdown seems to be where I have set up camp.  I don’t know how long I will stay, or if my camp will ever move on to acceptance.   I do what I can to find a way to survive where I am, never having all the answers, always having to fight, not just for my son’s life, but for understanding from the non-diabetic community.

Those who don’t live this life, 24/7 don’t understand the difficulty.  In a way, I feel it is my duty to report what we go through.  Maybe to raise awareness, but mostly to raise empathy.  I would hate to watch my son navigate through an environment where no one knew what Type 1 Diabetes entailed, and had no idea how hard it was to live in a world that requires constant vigilance and monitoring.

Carter was released 5 hours after being admitted to the Emergency Room, luckily that is all he needed this time.  I caught him in dehydration, and the beginning of DKA.  I’m glad that I caught it, I’m happy that I stopped DKA in its tracks, but angry at the same time that my son is continually haunted by the possibility of an illness where he is worse off than his sisters because of a misunderstood autoimmune disease that doesn’t play fair.

I would be remiss, if I didn’t document these trails, if I didn’t talk candidly about the world that the majority of Type 1 Diabetics live in, just on the brink, the brink of  life, which consequently also is the brink of insanity.

I believe that is the cliff I have been hanging on for the past 2.5 years, the brink of insanity.  Knowing at any moment my son could land in the ER, knowing that my tireless efforts throughout the day, are futile, knowing that even though I live in “groundhog day” the outcome of each day managing Type 1 in my son, always delivers a different outcome.

It’s unfair, it’s inconsistent, but it’s our reality.  It’s our hell, it’s our purgatory, until there is a cure.

Diabetes Makes Me Different

My siteCarter: Mom, I want to take my site off.

Me: Why Buddy?

Carter: Because I don’t want people to laugh at me

Me: Who would laugh at you?

Carter: People

Me: Why do you think they would laugh at your pump?

Carter: Because it makes me different.

Me: You earned that pump, it’s what keeps you healthy. If anyone laughs, or tries to make you feel “different”, you tell them it’s your bravery patch that you wear. Tell them that they wouldn’t think getting poked with a needle for every meal would be that funny if they had to do it. Buddy, your pump does make you different, it shows how brave you are, how conscious of your health you are, and have to be, and it’s the best tool we have to keep you healthy.

Carter: OK mom.

Me: I love you buddy…..

Carter: I love you Mom.

I cried, I went downstairs and cried for about 15 minutes.

The best part of this conversation, was that my six-year-old heard it and came in to Carter’s room to reassure him of his bravery. She also told him that she would always protect him and wouldn’t let anyone laugh at him. I have watched Ashleigh protect her brother, when at birthday parties, or even at the park, she has fiercely defended her brother, and I know I can count on her to protect her brother’s spirit and feelings.

I hate that my son feels different, but am so happy that I gave birth to a fierce warrior who will assist me in protecting my brave son, and will make sure that he is not misunderstood.

This is exactly why I let Carter put a site on my arm, I don’t ever want him to feel alone.

Getting the Insulin Pump

animas pingIf someone would have told me that starting the insulin pump for Carter would change our lives, I would have agreed, but thought so for negative reasons.

Learning a whole new system of managing his diabetes, along with a convoluted new vocabulary, then the removal of the long acting insulin that kept him stable through the night, was enough to have me running the other direction.

I had debated the pump switch for well over a year, always finding an excuse to avoid the transition.  Carter’s  A1c seemed on track, and I was literally living day to day, hour by hour some days.

I made the decision in July of 2015, about a year and a half in to Carter’s diagnosis.  It took a while to get everything together and ordered, in order to set up his pump experience.

Carter officially started insulin pump therapy on January 5, 2016, and it has changed our lives, but for the better.  Although I am up virtually all night as we adjust to “pump life”, I am so thrilled with how much better Carter’s glucose numbers have been.

We recently went to Carter’s endo appointment and learned that his A1c was down from 8.0 in November 2015, to 7.8 in February 2016.  I truly believe that month on the pump prior to the A1c check made a huge difference.  It’s not a massive change to his A1c, but it was enough of a change to solidify that we made the right decision.

Carter does have tighter control on his numbers, and I have noticed that my happy child has returned.  Site changes have become easier and take only 2 minutes, every 3 days.  I would watch Carter tense up before every meal, anticipating the shot of his insulin in order to eat.  I love being able to dose him remotely and not have it hurt him.

We’ve adjusted relatively well to having a pump, and Carter loves the freedom it gives him, to graze and not be poked all the time.  It reminds me, that even though this disease is awful at times, and requires immense vigilance, we are so lucky to live in the time we do.  Having the luxury of these machines, that are able to help us live our lives in the closest manner to normal as possible, enables not just longevity, but a better quality of life overall.

Having better control of Carter’s numbers means the likelihood of complications as he gets older gets diminished.  This is better for me, as his mom, but most important, it is better for Carter.  Ultimately, this is why I chose to start the pump for Carter, though it was a major life change and adjustment, Carter, being able to live life to the fullest, not being help back by Type 1 Diabetes was worth every sleepless night.

Insulin Pump Comparison, comparing insulin pump functions, and pros vs cons.

 

The Vulnerability in Type 1 Diabetes

I hopeVulnerability, it’s not something we as human beings embrace. Vulnerability has been linked to and associated with weakness, obligation, onus, all descriptive of feelings that are capable of haunting someone. The vulnerability in Type 1 Diabetes is hard to escape. I have been vulnerable since my son’s diagnosis in November of 2013. It feels like feeling vulnerable is the norm, and feeling secure is a fleeting feeling that I experience once in a while.

Being so fragile, constantly, is exhausting. I work continually to clamber back toward who I used to be, overtly confident, non-affected, gliding through life seeming to have it all together. Now if I can make it to my kids bed time without a major break down, I have conquered the day.

Living life under a microscope, essentially in a pressure cooker, the majority of the time, I feel like I am about to burst from all the pressure. Most days, I feel like I am barely hanging on.  This has been exacerbated this week, as Carter started the pump on Tuesday.

We had finally, in some ways, fell into a routine.  We knew how Carter reacted to dosages of insulin, how much he needed at any given time, and would just inject him to correct a high, or to dose him to cover what he was about to ingest.  His a1C was good in October 2015, 8.0.  I was thrilled, but at the end of the day, it all could be better.

I decided I would get Carter the pump, mostly because it would mean less pokes.  I envisioned the ease of dosing him remotely, letting him graze throughout the day to his heart’s content, and allowing him that milk he pleads for at 2:00 AM at his night check.  After all, it would just require a quick press on the remote, and he would be dosed!

I didn’t account for the complete change that starting the pump introduces.  I came home from our appointment Tuesday, the appointment where I had to put in my first infusion set.   I succeeded, but felt suffocated by the feelings of vulnerability that took over, and not only have they not left, they have grown in the 4 days since we began this new journey.

At the end of the day, it feels like Carter was diagnosed all over again.  I wasn’t prepared for the emotional toll starting the pump would take on me.  Waking every 2 hours through the night to check his blood is exhausting.  I feel so tired and so defeated, but I cling to the understanding that once I master this learning curve everyone is going to be happier.

Dealing with failed sites, an infected site, and every other issue known to happen when on the pump within the first week has been overwhelming.  But I watch the joy on my son’s face when he looks down at the pump as it vibrates, injecting insulin.  He beams, and lets me know he’s getting his insulin.

Being able to have the freedom to not get so many pokes, I watched Carter start to eat more.  The unspoken toll that this all takes on the diabetic is heartbreaking.  It is so hard to comprehend what they go through, and not get so caught up in the emotional toll it takes on the caregiver.  At the end of the day, feeling vulnerable doesn’t hold a candle to the peace my son feels being on the pump.

If I have to learn a difficult new task every hour of every day to ensure that my son feels as normal and happy as can be, I will do it in a heart beat.  Watching his happiness grow, along with his appetite, makes this transition less anxiety ridden, and more exciting for the possibilities Carter now has to live life to the fullest, despite having Type 1 Diabetes.

 

*My son is using the Animas Ping Pump.  For more information, visit Animas.com

Tired of Type 1 Diabetes

www.wrha.mb.ca
www.wrha.mb.ca

I’m tired.  Tired of the blood checking, tired of the dosing, tired of the mathematical calculations, but most of all, I’m tired of watching my son battle this disease every minute of every day.

I’m tired of the constant changes, tired of the not knowing, tired of the what ifs, tired of grieving.  I would love a break, it’s something I fantasize about, dream about, something I know is not a reality.

I think back to those first 17-months of my son’s life, it was a different time back then.  It was a time where we took every minute of every day for granted.  We were carefree, before I even had a concept of what the word carefree really meant.  We lived “normal” lives, with the “normal” worries.  What we were going to wear that day, what we would eat for dinner, where I would take the kids to get them out of the house.

Now there is so much effort put into Carter’s care.  It’s exhausting.  We went to look at insulin pumps today, and I wasn’t prepared for the emotion it would bring to the surface.  It wasn’t long ago that we were thrust into this life, with no choice, now here I was looking at technology strewn across the table, and presented with the choice of which small device I wanted to pick to assist me in keeping my son alive.

I am grateful for the insulin pump, which will allow greater freedom for Carter to be a child, though connected to a device, he won’t have to slow down to get a shot.  This in turn will allow him to not get poked multiple times throughout the day, it will be one bigger poke every 3 days and then but for the cell phone shaped pump he will harness to his clothes, Type 1 Diabetes will be somewhat less invasive.

For all intents and purposes, today should have been a joyous occasion, well as joyous as picking out hardware for a disease you hate could be.  But as we sat and listened to what training would be required, how the pump differs from multiple daily injections, the risk of Carter being able to unlock the pump and dose himself enough insulin to kill him, the weight of this change hit me.

All in all, I know this is the right choice, the right change, it will carry with it a learning curve, as any change that sustains your child’s life should.  I know I will have better management of Carter’s numbers, he will be in range more, he will be free enjoy being a kid, etc. etc.  Yet there are aspects that are a scary new.

As I sat tonight meditating on the choices ahead of me while out to dinner, I sat at the table with Ashleigh and Natasha while Greg took Carter to the restroom with him.  As we sat at the table, across the way from the bathroom, I heard Carter’s screams and yells.  I looked up and met Ashleigh’s sad eyes as she said to me: “Carter just got his shot.”  It was affirmation that I’m making a better choice for my son.

I hate Type 1 Diabetes, and ultimately, I’m just tired.

Switching to an Insulin Pump

www.medtronicdiabetes.com
www.medtronicdiabetes.com

Researching insulin pumps is bittersweet.  It’s exciting knowing that there will be more freedom for your child, yet at the same time, it’s a daunting task.  Searching for the best “device” to keep your child alive, was never something I thought I would have to do.

I look at the features of these insulin pumps and am impressed with how I will be able to remotely dose Carter from another room, as opposed to having to chase him and nail him down to inject the insulin up to eight times a day.  Then of course, the stories from other pump users about the tightening of numbers, better A1c numbers, etc.  The pro’s seem to negate the cons.

Yet the closer I get, my nerves make me wonder if I am strong enough to go through with it all.  Learning a new system, one which may take up to a month to fully understand and tweak to get Carter’s ratios right, it all seems counter-intuitive.

I am comfortable with Multi Daily Injections, but deep down I know Carter isn’t.     Carter is who this is ultimately about, although I know the one larger poke every 2-3 days will take some getting used to, Carter will enjoy being more “normal” while walking through the most not normal circumstances, having to manage his Type 1 Diabetes.

Carter’s health and well-being are the most important thing to me, no matter what I have to do to accomplish that.  Yet, I feel like I am yet again grieving this diagnosis, though we are almost 2-years into it.  Up until now, Carter’s Type 1 Diabetes was virtually an invisible disease.  One that was only noticed when I would check his blood or dose him.  Now, wearing a pump, it will be an advertisement of his condition.

All this makes me realize how fragile I still am.  When we started giving Carter shots, we didn’t have a choice.  It was a necessity in order to keep him alive and have him survive.  Now I have a choice, it’s odd making life saving choices for your preschooler; and honestly given the choice, I would choose not to have to deal with Type 1 Diabetes.

Ultimately,  all I’m trying to do is raise a healthy and happy little boy who doesn’t feel held back.  Right now I believe the pump will give us that.  It’s hard enough having Type 1 Diabetes to manage, I’m striving to give my son just a little bit more freedom, and hopefully through this new learning curve and process it will help me feel less broken.