Category Archives: Sick Day Management

When You Feel Numb

There are days when you just feel numb. Whether you are new to diagnosis, or like us, have been managing Type 1 Diabetes for the past three years, some days are harder than others.

Carter has been struggling with lows lately, and sickness has once again permeated our home. My oldest daughter is recovering from bronchitis, and I have been working feverishly to keep the virus from attaching itself to Carter, add-on being 11-weeks into my fourth pregnancy and it’s a recipe for ultimate exhaustion.
While making dinner tonight, I heard Carter’s dex receiver beep. It was his low alert, I called him downstairs and asked him to bring me his receiver and come to me in the kitchen so I could help him correct his low. He brought me his receiver, I grabbed a yogurt handed it to him and told him to eat it.

Carter walked out of the kitchen, placed the yogurt on the dining room table, and went back upstairs to play with his sisters, unbeknownst to me. A few minutes later I hear his urgent low alarm sound. I run out of the kitchen, look at his dex, he is now 55. I race upstairs and walk into my daughter’s room and see a dazed Carter sitting on the floor.
I grab him, grab the frosting from his bag and shove it in his mouth. Once he is rising, and has finally hit a number in range, out of pure frustration I yelled at him. I yelled at him for being so irresponsible, for creating an emergency that wasn’t needed, but mostly because he knowingly left me to be the only one caring about his low blood sugar. Eventually Carter understood the error he had made, and promised me he would work harder at following instructions so this doesn’t happen again.

Now that my son is peacefully asleep, with good blood sugars, I am overwhelmed with guilt and sorrow. I understand that my son is only 4-years-old, but by the same token, having been dealing with Type 1 Management for the past three years, he is well aware of what is required to keep him healthy. I am very open with my son with the care we must have to ensure his survival, and what that entails, as well as the ramifications of not following the regime. Not taking care of himself results in a hospital stay at best, at worst it means death.

When Type 1 Diabetes has been dealt, there is no time for games. No time to test the waters, the consequences of playing games is too costly. I can’t be the only one in this house who cares about his health. With Carter starting school in less than six months, he has to obtain an accountability for his care.

He has to grow up fast, it’s unfair, it sucks, but it’s necessary. If I wasn’t preparing him to care for himself without my presence, I wouldn’t be doing my job as a Mom.

So though I feel guilty, though I feel sorrow, I know these feelings are temporary, that tomorrow is a new day, and that with each incident Carter is learning a lesson. He’s learning what my expectations of him are, what he must do to stay healthy, that he is accountable, but most of all, even though there was anger, he knows it is out of immense love for him that I am so serious about his care.

May tomorrow be filled with more feeling, feelings of joy, feelings of love, and less filled with the numb walk of going through the motions of managing 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.

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.

 

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.

Type 1 Diabetes and Anger

diabetesthoughts.blogspot.com
diabetesthoughts.blogspot.com

“Don’t hurt me mommy!” This is the new phrase that comes out of my son’s mouth lately when I check his blood or give him a shot of insulin.

Type 1 Diabetes and anger walk side by side, and as Carter gets older he is manifesting a hatred for the life he has to lead.  I understand, to a degree, his anger.  I work hard to not be angry daily dealing with this disease.

It’s harder lately, as Carter pushes back when it comes to his care and the management of this horribly frustrating disease.  As his mother my heart breaks into pieces hearing him plead with me not to hurt him.  Then I am stuck with the difficult task of trying to explain to my not even 3-year-old son that in order to live I must poke him.

This year has been really hard so far, we have battled illness continually in some form since January, and feeling crummy already, then having to get pricked and poked in order to make sure DKA doesn’t add fuel to the fire was rough for Carter.

There have been many days this year that I have wanted to throw in the towel, but then remember I can’t.  Type 1 Diabetes never clocks out, there is never a down time.  The only options you have is to find ways to push through the exhaustion and the disappointment that greets you daily.

My prayer is that Carter will understand soon how because I love him so much I monitor his care so closely.  I know he will grasp this concept eventually, yet now there is an added dread to the blood checks and shots that exist throughout our day.

I watch my son wince when I grab his hand, just to hold it.  Every time I touch him, he anticipates a poke.  I take every opportunity to just hold him and cuddle with him, in an effort to reinforce our bond and connection minus the diabetic care.

I know this phase will end at some point, yet being in the midst of it is trying…to put it nicely.  I don’t know if my anger toward Type 1 Diabetes will ever completely subside, and now watching my son’s anger grow is a hard thing to witness.  I remember that his journey is much different from mine, and I must allow him these feelings in order to move past them.

“The forces that tend for evil are great and terrible, but the forces of truth and love and courage and honesty and generosity and sympathy are also stronger than ever before.”

Theodore Roosevelt

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.

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 Hypoglycemia.  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.