Tag Archives: Lancets

Numbers

My world has become consumed with numbers. A1c, 6.8, glucose rage 100 – 140, danger zone 70 or below, conversely 180 or above. Alarm sets for 12:00 AM, 3:00 AM, 6:00 AM, blood glucose checks every two to three hours, more if needed. Copay amounts, numbers of vials of insulin, amount of units to be dosed to cover carbs to be consumed, but through all these numbers, the most important number, five…..the age of my son who works through these numbers every hour of everyday with me.

Two nights ago, exhausted, my alarm went off at 3:00 AM, i snoozed it and 5 minutes later it went off again. I had checked Carter at midnight, and his blood sugar was 180. He didn’t have any insulin on board, other than his basal insulin and my body tried to convince me to just go back to sleep, that he was fine. My heart and brain knew better, I staggered out of bed and checked him……..45. The race began to save his life, as happens often with this disease.

My flight down the stairs began. I grabbed a juice box, a cup of milk, and some marshmallows, and his glucagon, running back upstairs prepared for anything. Carter started not being responsive to the juice box, I climbed into his bed, and sat him up, shaking, he started to open his eyes. I opened his mouth and squeezed the juice in. He started to respond. A new number became prevalent, 20, the number of minutes I would sit with him to make sure this low is properly corrected.

Carter fell back to sleep, in my arms, and I then sat counting his breaths. It’s never the same scenario, never the same number, never the same correction that works. It always feels like a gamble, shooting in the dark to see what will work this time. I then have this 20 minutes of sitting in the dark of my son’s room to think about the number of times I have called and beg and pleaded with insurance to approve the devices we need in order to keep my son alive, only to be denied.

My mind shifts to the number three, the exact number of weeks until Carter starts school, and will be in the care of teachers who don’t know what his lows look like, what his high blood sugars look like. Ten, the number of minutes it takes me to convince myself that pushing past my fears is the only way to give Carter a normal life in spite of this disease.

It’s all numbers, all the time. Luckily, this time everything worked out OK, after 20 minutes, I re-checked Carter and his blood sugar was 110. I spent the following 10 minutes stopping myself from think of the “what if” scenarios. Left back at one, another hour of sleep lost, but grateful that Carter was safe.

Managing Type 1 Diabetes is all about numbers, and calculations, and math. One wrong calculation can be unbelievably detrimental, and shift the whole day or night. We have become really good with numbers in this house, we have had to. Yet the biggest number that I hope to see grow, is the awareness of those in my life and beyond who will gain a better understanding of what carter goes through in order to survive.

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.

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.

Discharged

Ashleigh administering Carter's insulin - May 2014
Ashleigh administering Carter’s insulin – May 2014

When your child is in the hospital, there is no better word than “Discharged.”  I remember when Carter was finally on the Pediatric floor and out of the PICU, all I longed for was to be discharged and be heading home.  I asked everyday, when they thought we would be able to go home.  I was so tired of the hospital, I was tired of watching Carter’s frustration as he sat in a foreign bed, in a foreign place, without his sister, his toys, his comforts.  Then the day came, five days after the whole ordeal named Diabetes began, the nurse and endocrinologist walked into Carter’s room and notified us that we were to be discharged that afternoon before dinner.  The relief and excitement that poured over me was immense.  I immediately began packing up Carter’s room, called my sister who was watching Ashleigh and let her know we would be there that afternoon to pick her up.  I was elated, and when the nurse walked in with Carter’s care package filed with insulin, needles, lancets, test strips, etc. fear pummeled me.  I was lost in a sea of doubt, uncertainty, and hesitation.  I joked with one of the nurses that I would pack her secretly in my suitcase and take her home with us to administer the shots to Carter.  I wondered if I honestly could manage this monumental task that weighed heavily on me and my family.  Everything was riding on my success, based on my training, and retention of it as we walked out of the automatic doors of the hospital,  to our car.  Carter was overcome with joy when the outline of our car came into his view.  I remember picking him up from the wagon we transported him in and he hugged and kissed me repeatedly.  We drove home, I watched Carter looking out the car window, discovering the world for a second time.  He almost didn’t want to blink, in case he missed something.  He needed to see what in the world had changed since he had been hostage in the hospital for a week.  We quickly stopped by the store so I could grab something to make Carter for dinner, on his new “exchange diet.”  When I walked out of the store from my 2 min. shopping trip, Greg hurled the car toward where I was and with the window rolled down yelled out: “Carter’s blood is 500!”  I jumped in the car, we raced home, we had already failed.  Downtrodden we raced inside and gave Carter insulin and some milk while I quickly made him some dinner.  When we checked him 3 hours later he was finally in the ballpark of 160 and the sense of accomplishment was immense.  We had done it, without a nursing staff, without a doctor under our roof, we had safely brought our son back where he needed to be with the help of our training.   It was then that I realized I had it in me to properly care for Carter, we were given everything we needed to equip us in order to be successful.  The mix of emotions at the beginning of a diagnosis, as we muddled through were exhausting.  It’s through trail and error that we learned of long distance car rides and how the inactivity generates a higher blood sugar.  When I look back at those first few weeks and the trepidation I experienced, yet the perseverance I searched for, and see where we are today I see the confidence I have gained.  Carter now is assisting in managing his own blood, and Ashleigh is helping administering shots.  The word discharged shouldn’t hold with it fear, it should be the boost of confidence that it is meant to be.   Realizing that those who have been trained to save lives, at that point trust that you are able to step in and take their place on behalf of your child.  Expect that you won’t have all the answers, you will stumble, but you WILL find the answers, and you will prevail.  Confidence is a funny thing, most times it comes after one has been knocked down, yet once confidence starts building, the climb only intensifies.  “Discharge” was the beginning of our new lives, or new independence, and Carter’s health.