Tag Archives: Toddler with type 1 diabetes

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 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.

 

Type 1 Diabetes and PTSD

Carter HospitalWhen your child is diagnosed with Type 1 Diabetes, you are left with scars. Scars you don’t even realize are there, until the scars get ripped open again.

Sick days have come and gone throughout the course of this past year and a half of managing my son’s Type 1 Diabetes, all without incident.  This week, everything changed.  The dreaded return to the hospital inched closer and closer.

Carter started a fever on Wednesday afternoon, an afternoon where we happened to be on our second day of a mini vacation and 300 miles away from home.   I monitored his symptoms and fever, and Thursday morning his ketone strip showed he had large ketones.  Carter hasn’t had ketones since his diagnosis in November 2013.

At first I panicked, then I called Carter’s Endocrinologist.  We walked through the care I needed to provide, and we headed home.  By Thursday night I had reduced his ketones from large to moderate.  By Friday morning his ketones were back up to large.  It was then that I decided to take him to the Children’s Hospital.

Since this was the hospital he was diagnosed at, walking in after almost two years was rough.  I felt a twinge if PTSD as we entered the hospital.  Being in the ER was new, but when we were admitted, walking onto the peds floor, the smell of it took me back to November 2013, Carter’s diagnosis.  I was overwhelmed with heartache.

Being a parent, especially one to a child with a disability, carries an extra heavy weight with it.  The decisions we have to make aren’t always the easiest ones, often times they involve admitting our child to the hospital where we know there will be pain and suffering in order to catch up to survival.

Watching my now 3-year-old struggle with fear while we sat waiting for the IV to be put in was horrible.  I wanted nothing more than to scoop him up and walk out of the hospital and go home.  I knew that wasn’t an option.  I knew if my son had any chance of getting over this virus without entering into Diabetic Ketoacidosis remaining and getting an IV was the only solution.

Being in the hospital with the year and a half’s worth of knowledge we reluctantly have learned made this stay extra frustrating and difficult.  Knowing the specific things that worked for Carter within his care and having pushback from the nurses who weren’t familiar with managing Type 1 Diabetes in such a young child was unbelievably frustrating.  Yet it reminded me that no matter the situation, even with medical staff, I am always my son’s best advocate.

Reliving what we went through at diagnosis, thankfully on a smaller scale, brought back so many old feelings, and unwrapped scares I thought I had successfully allowed to heal.  I started to get angry, but decided to pour that anger and sadness into fighting harder for a cure.

Although our latest overnight stay at the hospital was difficult emotionally and physically draining, it was necessary for Carter to get well.  It also allowed us as a family, included Carter to grow when it comes to managing Type 1 Diabetes in him.  We are now all acutely aware of new ways to assist in reducing a hospital stay, and were reminded how quickly things can change when it comes to life with Type 1 Diabetes.

How to Deal, Type 1 Diabetes Disappointments

BraveryIt’s easy to talk about the luck of manageability of Type 1 Diabetes when things are going well. It’s harder to see the end of the tunnel when you have had a day filled with disappointment because of Type 1 Diabetes.

Today we had Carter’s check up with his Endocrinologist. His A1c was up to 8.6 from 7.8 three months ago. I have to admit I felt defeated and like I had failed. Carter’s doctor wasn’t concerned and even expected that he would be higher due to his growth and the fact that Carter has been battling illness for the past month.

Though we only slightly adjusted Carter’s insulin to carbohydrate ratios, I found throughout the rest of the appointment I was struggling with the feelings of disappointment.

I know there are peaks ad valleys when it comes to Type 1 Diabetes management, and knowing what illness and growth, as well as a bevy of other factors do to someone with Type 1 Diabetes, getting news you weren’t wanting can make you feel deflated. Pulling internal self together and reminding myself that Carter’s level of care he receives from me and his Dad hasn’t changed, assisted me with digesting the news.

There are times while traveling this journey that is being the parent of a diabetic where defeat becomes a regular feeling.  Victories can get clouded, shrouded in the perceived failures, and the misconceptions that managing this disease carries.

Recognizing that this too shall pass and that without these set backs we wouldn’t know what needed to change can be difficult when you are in the midst of the disappointment.

Allowing the reassurance, and remembering that a A1c result that wasn’t what wad expected doesn’t mean that you are a failure, it means that things yet again have changed when it comes to Type 1 Diabetes.  The one thing that is consistent with Type 1 Diabetes care and management, is inconsistency.

Realizing that because of those inconsistencies, numbers are often harder to manage and maintain, as well as test results may reflect an arena that is contradictory to what you have worked so hard to get away from, is part of what makes this disease so frustrating in one moment, when in the next moment beating the algorithm of Diabetes can feel like such an accomplishment.

The best advice I can give, is to not view a negative report as a personal failure.  Use it as a learning tool, and allow it to be a bigger view into your child’s make up.  No two people are a like, therefore management of Type 1 Diabetes varies from patient to patient.

Stumble and fall, but always get up and fight back.

Transitioning with Diabetes

TransitionTransitioning with Diabetes is difficult.  One of the hardest, yet most rewarding tasks I completed this year, was ordering Carter’s Medical ID bracelet. It took me a while to be able to even stomach ordering it for him.  Though I had accepted Type 1 Diabetes, for the most part, somehow ordering the worn declaration was to difficult for me.

I finally set aside my feelings and found a retailer online and placed the order.  Once I hit send on my order, I cried.  I find it captivating how many actions are tied to emotions surrounding my son’s diagnosis.  Maybe it’s because I am still so raw.  Maybe it’s because my hand was forced and I don’t take well to losing control.

One thing I have realized this year is the importance of knowledge.  Knowing, truly is half the battle.  God forbid anything were to happen to me, and Carter needed assistance, who would tell the rescuers he is a Type 1 Diabetic?  It was another moment when I realized this isn’t about me or my feelings, it’s about my son.

When the bracelet arrived, I unwrapped the package, placed it on Carter’s wrist, then unwrapped my peace of mind from sadness.  I know Carter will adjust to wearing it, and I will have complete peace of mind, especially when he starts school and is not always within arms reach of me.  Letting go is so difficult, especially when you have a child whose physical wellbeing are dependent on you, 24/7.

Transition, though difficult, creates better boundaries, more confident people, more positive interaction, and a comfort within oneself that is only achieved by trudging through the pain and disappointment that has been handed to us.

New Day, New Challenges

Carter 9.2014Carter has been struggling these past two weeks with sickness, and has been going through the typical 2-year-old behaviors.  He’s extra sensitive, and needy which makes it difficult to effectively manage his Diabetes.  Everything is a fight with him lately, it’s been exhausting.

We also recently found out that we are expecting our third child, and being that I am in my first trimester, I am extra tired and my nerves are worn thin.  Yet I realize that within his growth, there will be many stages of his acceptance.  As he gets older, he will need to process his care with each new realization he receives regarding what all is involved.  The more his understanding grows, the more he has to process.

Since he is much older today than he was when he was diagnosed, he is able to let me know when he is feeling low, when he needs a snack, when he needs his blood checked, and when he is high, by letting me know he’s very thirsty.  With his age I am grateful at his level of understanding, and am impressed with how keenly he is tuned to his needs.

Carter has needed extra love and attention lately, and Ashleigh has seen him receiving that and therefore has needed extra love too.  There are days I feel sucked dry, after all I am only one person, and at times I feel as though I don’t have much left to give.  But it’s in these times that I realize how much we have achieved and I also realize how I have taken for granted the growth Carter has had.

I remember longing for the day that he was able to effectively communicate his needs to me, we are now there.  It’s a small glimpse and reminder that the struggles and frustrations we go through today will be resolved and a thing of the past come tomorrow.

So though with a new day comes new challenges, we have become victorious in navigating through the trials and finding the solutions in order to grow through and learn the ways to avoid the pitfalls that Diabetes offers.  I find peace in knowing that with each new challenge, it’s going to help Carter, and us as a family grow even further then we are today.  Our immense feelings of being overwhelmed are slowly becoming a thing of the past, and Carter’s ownership of his needs and diabetic management are growing.

Hopeful, is one word I never believed I would use when talking about Type 1 Diabetes, especially as it pertained to my son.  Yet today I feel extremely hopeful that with the growth of his communication and understanding, these challenges will fade and we will continue to move onward and upward.