Diabetic Ketoacidosis (DKA)

warning signsDiabetic ketoacidosis (DKA) is a life-threatening condition that develops when cells in the body are unable to get the sugar (glucose) they need for energy because there is not enough insulin.

When the sugar cannot get into the cells, it stays in the blood. The kidneys filter some of the sugar from the blood and remove it from the body through urine.

Diabetes is a lifelong companion.  Because the cells cannot receive sugar for energy, the body begins to break down fat and muscle for energy. When this happens, ketones, or fatty acids, are produced and enter the bloodstream, causing the chemical imbalance (metabolic acidosis) called diabetic ketoacidosis.

My mind has been reeling this week, reading the story about Kycie Terry, and seeing the parallel between her initial misdiagnosis and Carter’s.

No child should have to suffer through DKA, especially in this day and age where we have the technology available to us to properly diagnose people, especially children.

I am heartbroken, and in some small way, through the updates, reliving what we went through with Carter to some degree.

I think when you are discharged from the hospital, you are so grateful to be headed home, and when you arrive there you find your path, working relentlessly as survival becomes your way of life, we forget how serious this disease can be, and how quickly everything can turn.

Carter has been battling a small cold for a couple of days now, and last night at 2:00 am he threw up and his blood sugar was 460.  I cried as I waiting for the ketone strip to dry and let me know the current status of Carter’s condition.

In conjunction with the news of Kycie, I realized how fragile everything really is.  DKA is what we fight to avoid, every second of everyday, that and Hyperglycemia.  Yet, the majority of the time the word survival is at the forefront of my mind.

I came to the realization that I don’t want my son growing up thinking he is “surviving”, I want him to live.  Finding the balance between the two can be tricky, especially when you have two monsters on each shoulder.  DKA, or Hypoglycemia.

Some days it feels impossible to find the right balance with Carter’s blood sugars.  Some days end with me feeling helplessly defeated.  But others end with me feeling accomplished, not only at keeping Carter’s blood sugars within range, but that while doing so he also lived a great day.

Knowing the importance of Diabetic Ketoacidosis is irreplaceable, especially if you have a child, or know someone who is exhibiting symptoms.  Knowing what to look for with early diabetes diagnosis can mean the difference between a simple early diagnosis, or a horrible diagnosis accompanied by DKA.

For more information on DKA and Type 1 Diabetes, please visit the JDRF website.

How To Get Your Life Back After Diagnosis

HardestOne minute everything is routine, the next your world is turned upside down.  You’re in shock, devastated, scrambling to save the life of your child as you watch them get sicker and sicker.

You cling to hope, faith,……you go over the past 2 weeks over and over again in your head while doctor after doctor streams in to save your child.  What did I miss?  I’m a horrible parent, it’s my job to protect my child and I failed.

Before you know it, you’re admitted, as a family, to the hospital for a week-long stay to rectify the mistake you made, the disaster you didn’t catch as the mother.  At least this is what I thought and felt as I watched the doctors and nurses come in and work feverishly to stabilize my son’s levels.

I stepped up, I rallied, but privately I couldn’t forgive myself.  I learned about auto immune diseases and how they work and was assured by all the medical staff that I didn’t do anything wrong.  Yet I couldn’t accept that.

It took me a long time to believe what the experts told me, and it took me an even longer time to forgive myself.

I believe one of the ways I can sit here today, 14 months into my son’s Type 1 Diabetes diagnosis, is I allow myself to be sad.  There are days when everything runs smoothly and I can end the day saying to myself, Type 1 Diabetes isn’t that bad, thankfully it is manageable.  Yet the majority of the time, Type 1 Diabetes isn’t manageable without a LOT if effort and grief.

Being the parent of a Type 1 Diabetic child carries with it, not just the vigilance that Type 1 Diabetes requires, but also the emotional aspect of watching your child carry a weight that you wouldn’t wish upon your worst enemy.

Type 1 Diabetes for the parent of a child afflicted, is emotionally and physically taxing and draining.  It’s also accompanied by anger at why and wondering how this happened to your child.  This is especially true when, as was in my case, you have a completely healthy first-born, and it’s your second born who became ill.

When I had raised both of my children that same, and my son has to live a life filled with night checks, mathematical equations at every meal, and poke after poke in order to survive.

I believe one of the ways I was able to get my life back, in a way, was to allow the grief and the frustration.  I didn’t deny that life most days sucks, I stand in that for a moment, then I pull it together and we forge through the day and make it a success.  Not allowing myself to feel, or allow the normal emotions that anyone in this position would have, would be a disservice to not only myself, but my family as a whole.

We are in a society where everyone expects that we be strong and remain fighters all of the time.  Phrases like, at least it’s not cancer, and, “You’re so lucky there are so many machines and technology to monitor for you” hit me to the core.  Yes, thankfully it is not cancer, however, just because it isn’t doesn’t mean that life for us is any easier.  For us there is no remission, we sit and live this way until there is a cure.  Then, as far as the technology, it certainly can be a help, if it works properly and if you can afford it to begin with.  Yet even with all the technology, there is always double checking.  One doesn’t rely on a continual glucose monitoring system to be its eyes and brain constantly, blindly expecting it to save their child and keep them alive.

So allowing myself to be disappointed at the days outcome of numbers, gives me the ability to remain human in an environment that requires a non human approach.  By that I mean, we are hit daily, multiple times a day with triage situations.  We aren’t really allowed to be tired or miscalculate a carb count for a meal, for those two things carry with them devastating consequences.  We have to be quick thinking, and always on our game.

So all in all, what saved my sanity was that fact that I allow myself to grieve often, and I allow my children to see me work through these feelings, but always pick up and charge to find the solution.  Showing that we are human and chasing perfection isn’t what this disease is all about.

It’s about making mistakes, but having the determination to find the proper solutions in order to survive, figuratively and literally.

Diabetes, and Dealing with Change

Carter - January 2015
Carter – January 2015

Change is rough, and often we are forced into it.  Going through it is always a struggle, and if given the choice most of us would avoid it.  So when it is thrust upon you, how do you deal with it.  Well, poorly at first, I remember the days and nights filled with tears, frustration and otherwise.  I remember combing through what went wrong,  how did my son get an autoimmune disease?

Those feelings get highlighted anytime I share Carter’s diagnosis with anyone new.  Oddly, this is especially true when the audience is of the medical profession.  It made me realize how encapsulated the endocrine system truly is.

The most interesting thing about having a child with Type 1 Diabetes, is that change doesn’t end with diagnosis.  Change comes frequently, and most times with an angry vengeance.  Routine is not a word that is used when speaking of how you manage Type 1 Diabetes.  I find that the majority of the changes we experience lately happen when Carter is sleeping.

When everything is winding down, and night draws in, Diabetes releases the gamut of all its tricks.  This consists of slamming my son into a 46 blood sugar, or throwing him into a 350 blood sugar.  Through exhaustion and sadness we have to be ready at the drop of a hat to change our current process, our sleep schedules (though after diagnosis sleep is almost non-existent).

We have to welcome change, and the majority of the time, the change isn’t good.  It’s more trauma, more sleep deprivation, more frustration, for both the parent and especially diabetic.

Realizing that the change you experience today, may not be the same change you struggle with tomorrow can be daunting, or a relief.  Being able to adapt is one of the most important parts of managing diabetes.  Finding ways to get through each day, some days is your biggest accomplishment.  Realizing that change is imminent and in order to save what ever sanity you have left, you have to learn to roll with it.

 

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.

One Year Post Diagnosis

Someone I loveToday’s the day, November 20, 2014, exactly one year after Carter was diagnosed with Type 1 Diabetes.  For a full year, I never really knew how I would feel today.

This time last year, I wished I was here, a year into things, I naively thought things would somehow be easier.  In some ways they are, but in others everything is still the same……difficult.

My biggest fear, this time last year, was the shots.  I am so grateful to have adjusted to that.  Dosing out insulin doesn’t terrify me anymore, it certainly has become second nature.  But the frustration associated with Type 1 Diabetes is still there and I believe will be forever.  Learning how to expect the hassle and not get flustered when it arrives is the key.

As a mother, being prepared for anything was a characteristic I had to learn when my first-born arrived.  Being prepared for everything when you have a child with Type 1 Diabetes is a whole different thing entirely.  Even with everything done the same way each and every hour of every day, we always live in the “what if.”

However, as  I reflect today, that biggest theme is gratitude.  I watch my son today, running and jumping, laughing, and full of life and realize that last year, as I sit sobbing in a PICU room, that this is what I longed for.  I longed for the day when Type 1 Diabetes management became part of our day, and we have arrived there.

Self doubt has left me alone for a while now, and I am more confident in my ability to care for my son, I watch my son taking more and more ownership of his care and where my heart hurts sometimes because of that,  I am comforted by his acceptance and knowledge of how important proper management is.

I sit here, exactly one year after my world caved in, and instead of living in the moment I am able to look to the future.  What I thought would break us, has pushed us closer together, highlighted what gratitude really means, and proven that anything you strive for can be accomplished.

So it is with a happy heart that I say happy one year anniversary to my son, it’s happy because we have made it through the roughest year of our lives and have come out on top.  My son, who is the bravest, most tenacious, happiest boy I know.  I am so proud to call him my son, and am so lucky to have my daughter who helps me care for her brother, and comforts me when she sees on certain days it becoming too cumbersome.

Type 1 Diabetes is an invasion, but with hope and love, and patience, the learning curve is obtained, and life carries on.

Does Time Heal Everything?

Juvenile Diabetes
Our Son Carter and I post diagnosis in the hospital with his first bottle of milk

I honestly don’t know how we arrived here.  One year into my son’s diagnosis, it feels like just yesterday that we were in the hospital desperately trying to hold it together, watching our son connected to every machine, fighting for his life.

Having Carter diagnosed in November, which is Diabetes Awareness Month, makes this 1 year anniversary that much more complex.

This year has been a whirlwind of activity, and learning, and monitoring.  When I think back to his time last year, I knew nothing about Type 1 Diabetes, and today I know more about this disease that inflicts my son and tries its best to push my family around, on an unwanted intimate level.

This year, I find November to be a double-edged sword.  I am grateful for the awareness and the advocacy, I do my best to advocate on behalf of my now two-year-old son, yet I also find my heart break a little more each and every day throughout November.  Maybe it is because the wound is still fresh, and lately all I can think of is what was happening this time last year.

These memories I know will fade, and I will be able to steadfastly view our accomplishments, but these days, those accomplishments are shrouded in pain.

I remember watching my son suffer for a week thinking he was fighting a virus, getting thinner and more gaunt with each passing day.  I remember how small he looked in the huge hospital bed, barely visible under all the wires and life support he was connected to.

I remember the last look my son gave me was pained, and though he was only 17-months-old and couldn’t speak, his eyes screamed help me.  I remember rushing home to pack our bags, and hearing the helicopter that carried our critical son across the sky to the children’s hospital, watching my then 4-year-old daughter run to window to yell goodbye to her brother, and feeling so helpless.

I remember the PICU, and the 3 days where Carter’s future were classified under “maybe.”  Being told by the nursing staff to go across the street and get some rest, and my husband and I refusing to leave our son’s side.  I remember finally being moved down to the pediatric floor, and the expectations I had, expecting Carter to spring out of bed and run around, and devour food.  I still recall the devastation I felt when that didn’t happen.

I remember having to place my son in a wagon in order to get him around while in the hospital, since he had a central line that started at his groin and went up to his heart, that once removed hindered his movement for 2 weeks because of bruising and pain.

I remember with each minute of training, watching what our life used to be, becoming a distant memory.  I recall wracking my brain for what we did different with Carter than Ashleigh, that inflicted him with this, even amid the proof and reassurance of the endocrinology team that we didn’t do anything wrong.

The feelings of helplessness, failure, anger, frustration, fear, exhaustion, I remember all of these so clearly.  Watching my son squirm and cry when someone with scrubs would walk into the room, having to push my fear aside in order to comfort my son.

I remember leaving, after a week in the hospital, and watching Carter’s elation at life being what it used to.  Looking out the window and excitedly waving goodbye to the building that tortured and poked him multiple times a day for a week, and then arriving home and having the torture continue.

But having been through all of that, I remember about a week after we’d been home and “adjusted” to our new life, I distinctly remember my son’s laughter which I hadn’t heard for well over a month.  I valued it more than I had before.

I realize that without that week of hell, and a crash course that overwhelmed me, I wouldn’t have my son.  So instead of having to rely on memories, I am blessed with the joy of watching my son persevere.

So while the month of November has been hard on me this year, I realize the importance of the advocacy, and the educational opportunities for all through the stories of sorrow and tenacity.

But most of all, I clearly see how God protected my son and my family through this 2 week span in November of 2013, and kept us safe, throughout the ignorance that shrouded my judgment and kept my son alive, and guided me to get him the help he needed to survive.

Managing Type 1 Diabetes

Diabetes RulesWhen living with Type 1 Diabetes, whether you have it or are the parent of a child who lives with it, there is a fine line you walk between fake positivity and realism.

There is a silent expectation that anyone afflicted with the task of managing Type 1 Diabetes must remain upbeat, and be grateful that this disease is manageable, where there is truth in these statements, there is also a pressure associated with the plastered on smiles and almost required denial of the hardship that Type 1 Diabetes management carries with it. I feel there is a negative stigma attached to people who can openly discuss how much Type 1 Diabetes sucks…….most days.

I find the link between this negativity can be traced to people who have never lived a day in the life of a diabetic, and who assume that cancer would be a worse diagnosis.  Each disease carry’s with it horrible days, devastating hardships, and diseases shouldn’t be compared to find the worse situation. It’s unfortunate that the comparisons between Type 1 Diabetes, Type 2 Diabetes, and all other diseases get tossed around.  Furthermore it’s frustrating that in the moment of frustration, most often brought on my the lack of control that becomes evident almost hourly when managing Type 1 Diabetes, people who don’t understand what all goes into diabetic management are the first to speak about their disdain for the complaint, and how grateful the diabetic community should be for the advances of medicine, etc.

I want to make perfectly clear how grateful I am for the advancement of medicine, I am indebted to those who have found ways to keep my son alive through the advancement of medicine, science, and technology.  Yet to live in the glass house that this is enough to properly manage Type 1 Diabetes is unrealistic.  Even with all the technology; a Dexcom CGM, a Pump, proper management of Type 1 Diabetes involves a continual vigilance.

There isn’t a minute of any day that goes by where Type 1 Diabetes isn’t ruling the day and it’s activities.  I fondly remember the excitement attached to outings, pre-diagnosis.  These days, packing the supplies and snacks needed for the “what ifs” that happen 90% of the time is exhausting.  Tack on the through the night checks, the fixing of the low blood sugars, fixing of the high blood sugars, constant blood checking, monitoring of exercise, assessing what carbs have actually been ingested to cover the insulin that had been injected…….there isn’t a time where diabetes management isn’t the focus.

As a bystander, allow the grieving, even if the diagnosis was 5 years ago.  One never really gets over the affliction that an auto immune disease carries with it.  Be supportive, understand the need for advocacy, be OK saying, I don’t understand but am here for you.  Most times we just need an understanding ear and a hug.  The worry that is attached to Type 1 Diabetes, especially in small children, is real and never goes away.

All things frustrating and encouraging about Type 1 Diabetes