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

Type 1 Diabetes, Two Years Later

11.20.15It’s two years later, and what have I learned? I’ve learned never to have expectations from Type 1 Diabetes, whatever I expect Type 1 to do, it will do the opposite.

I’ve learned that no matter the efforts, no matter what the statistics have been with Carter’s numbers for the past week, the day I think all will be well, it won’t.
I learned that in an instant, everything changes.
I’ve learned a new depth of sorrow. I’ve learned how to rapidly pull myself out of that hole, so I can manage Type 1 for my son.
I have learned who my real friends and family are.

I have learned to walk alongside something I hate with every fiber of my being, and work with it, not against it.
I learned that Type 1 Diabetes is a family disease and it affects my daughter, Carter’s older sister, just as much as me.
I have learned how to push past the distraction, past the pain, past the disappointment and love like I have never loved before.

I have learned how to value life, how precious every moment truly is.
I have learned patience, perseverance, and passion in advocacy.
I have learned about how I am in charge not only of my happiness, but the happiness of my children, especially my son after each poke he endures.
I have learned, that no matter how tired, how defeated I feel each morning, MY mood sets the tone for the rest of the day.
I have learned to really celebrate the victories, as they are few.
I have learned the true definition of surrender. My biggest adversary is something I cannot control.
I have learned the depth of a mothers love, over and over, and over again.
I have learned what it means to never give up. Never give in, and never back down.
I have learned how to live under constant pressure.
Most of all, I have learned a convoluted, antiquated process filled with algorithms that are necessary to keep my son alive. Insulin is not a cure, it is my son’s life support. I hate the process, but I love the outcome. I remember that on November 20, 2013 I was faced with losing my son, and I will do everything in my power to make sure that never happens again.
I learned about my strength, I learned that no matter how wounded or scared my heart is, I always have the capacity for great love for my children.
I have learned that through tragedy, come great triumphs. I hate Type 1 Diabetes, but I love what it has brought out in my family in these past two years.

The Impact of Type 1 Diabetes

Carter and Daddy beach June 2015It had been two days since I’d showered, standing in the bathroom in the same clothes I was in two days earlier when we took my son to the Emergency Room when he was then diagnosed with Type 1 Diabetes, I looked at my tired face trying to convince myself everything was OK.

It’s manageable, I told myself, nothing will change, I told myself….I was wrong, everything changed.  Everything continues to change.  Relationships,  outings, our daily routine, car rides, meals, baths, fun days, days filled with lethargy, too much activity, not enough activity, NOTHING is ever the same.

Having a child with Type 1 Diabetes is a lot like being the only married couple in your group of friends who has kids.  There is no common ground anymore,  ground where you can relate with what your other friends are going through.  Human nature propels you, when in this situation, to find new friends who have kids and you somewhat leave your old, single friends behind as you grow.

The same is true with a Type 1 Diabetes diagnosis, you are living a different life, in a different world, where relating with your daily reality as a caregiver to a Type 1 Diabetic child is difficult to understand.  People think you’re overreacting, or a helicopter parent as you monitor your child’s every move, every morsel they consume, in order to calculate the insulin dose they need to cover what they have ingested.  Too much insulin, they die, too little they die, it’s all too much to explain to someone who doesn’t know what it is like to live without a working pancreas.

Extended family, old friends, new friends,  there is so much to explain, all of the time,  so much to be judged on by the unknowing  eye.  In an effort to remain protected,  you disconnect.   Everything is too exhausting, and it’s too much to explain to those who have never gone through this crisis.

It’s refreshing when you surround yourself with those who have been through the dark tunnel you have.  Those who know what it feels like to always have the hair standing up on the back of your neck, those who reassure you that you’re not being overprotective, or ridiculous, or irrational, those who know what it is like to walk in to check your child’s blood sugar and breathe a sigh of relief when you pick up their hand and it’s warm.

The reality is that having a child with Type 1 Diabetes, death is always shadowing you.  Miraculously the disease is manageable, yet the effort poured into managing your child’s health is often overlooked.  Type 1 Diabetes, for all intents and purposes is a silent disease.  One that isn’t visible, and  one that shrouds the care that is necessary in mystery, but for those who live it.

As I sat there in that hospital bathroom, looking at my tired face, watching the lines being etched, and the grey hairs forming, desperately trying to convince myself this was all doable, manageable, I was unaware that in those moments I was shedding who I used to be.  That week in the hospital we were given the armor we needed to navigate through this life with a diabetic child, but we weren’t trained on how to navigate the existing relationships who had no way of understanding what we needed.  We didn’t even understand what we needed to survive.

Finding your new path while working feverishly to maintain some semblance of normalcy, leaves hurt feelings in the wake of your diagnosis.  It takes some time to be OK with those who judge or wallow in the hurt of being left behind.  After all, there is a bigger purpose here, a bigger calling.  Let those who don’t understand find their path, your time is filled, navigating the path toward those who do understand and who stand at the end of the tunnel with open arms to embrace you.

 

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.

 

Heartbreak Heard Around the World

Know the symptomsHeartbreak, disbelief, anguish.  These are the feelings I had this weekend when I heard news of Kycie Terry’s passing.    For six months I have followed the story of the beautiful, bright-eyed 5-year-old who won our hearts with her story of courage, and strength on the day she was diagnosed with Type 1 Diabetes in January 2015.

Followed the next day with the passing of another angel, David Brown II at the age of 4.  Another story of Diabetic Ketoacidosis (DKA) that could have been avoided had they been checked at the hospital with a glucometer.  David’s blood sugar was 770, which tragically ended his life when his brain swelled, and his kidney’s eventually failed due to the time with such high blood sugar.

These two tragedies arrive on the heels  of a week riddled with frustration within the diabetic community.  The CrossFit slander campaign, which incorrectly linked sugar to all diabetes diagnosis, was an exhausting hole to dig Type 1 Diabetes out of.  It’s incorrect information, such as CrossFit was spreading, that promotes the tragedy that is DKA.

People don’t automatically think their child could be suffering from the early onset of Type 1 Diabetes, because they don’t know the signs, they equate the disease to sugar intake and they couldn’t be more wrong.

Extreme thirst, immense urination (more than usual), significant drop in weight, sleepy all the time, these are a few of the symptoms that would be a reason to go to the ER and have your child’s blood sugar checked.

Diabetic Ketoacidosis is becoming an epidemic, my family is so fortunate to have made it through a DKA diagnosis.  Carter’s blood sugar was 880, higher than David’s and Carter was so much smaller.  My heart aches for these two families who lost their children this past weekend.  I can’t imagine the grief and anguish they feel, seeing how close we were to losing Carter, or having life altering complications, make me see how miraculous it is that Carter has had zero complications from his stint in DKA.

There is no excuse for doctors to not have the ability to check blood sugars with a simple prick to the finger.  One drop of blood makes all the difference, one drop of blood could save lives.  Misinformation needs to be corrected, and not just by the diabetic community.  It’s the responsibility of doctors to get behind this cause, we need to guard our children better.

The heartbreak heard around the world this weekend, was unnecessary, and due to misdiagnosis.  Now is the time to make changes, advocate for the children who aren’t able to advocate for themselves, it’s not just their health that is at stake, it’s their lives.

To the families of Kycie Terry and David Brown II, my most sincerest heartfelt condolences for the loss of your two precious babies.  Kycie and David will not be forgotten, their lives have meaning and they will help fuel the necessary changes that need to be made in order to protect future children from this horrible disease.

WE NEED A CURE.

 

All things frustrating and encouraging about Type 1 Diabetes