Tag Archives: flu

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.

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.

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.

Strength through Sensitivity

Ashleigh and Carter - April 2014
Ashleigh and Carter – April 2014

We have had a great week, numbers wise.  Unfortunately Ashleigh battled the flu throughout the week, and thankfully Carter walked through this week unscathed.  Absolutely zero symptoms of the flu, and all it takes is a slight change in our current routine and I am unbelievably exhausted.  Today, I could barely keep my eyes open once 3 PM hit.  I find that even these wonderful times where numbers are exceptional and diabetes seems to be playing nice, my body, when given a moment to pause, fails me.  I long for the day when we can enjoy, together, the easier times,  I remind myself we are only five months in, and my emotions are still fresh.  The dread, anguish, and exhaustion I push through 90% of the time catch up with me.  It’s in these good times when my body and spirit need to catch their breath.  Rejuvenation comes in many forms, and in the same way I allow my tears to flow in order to feel instead of go numb, my body has to go through the same process.  I thank God that this week, when my baby girl was so sick, I was able to take a little break from diabetes management and focus on assisting her in getting well again.  I watched Carter this week, I have never been privy to a two-year-old in the midst of worry, until this week.  Carter wanted to crawl into bed with his sister and help me nurse her back to health.  At one point when Ashleigh woke up at midnight and was throwing up, Carter stood in his doorway and reached for her.  I am constantly overwhelmed by the bond that my children share with each other.   I find that lately I am now fighting to find the strength through my sensitivity.  Everything seems to be effecting me lately, the thought of Ashleigh going to school for 3 hours a day starting in August has me really emotional.  It was then that I realized how we can cripple ourselves with co-dependence in the midst of tragedy.  Making sure that I am equipping my children and not hindering them has been on the forefront of my mind lately.  I feel as though I have put up with so much unwelcome change in these past five months, and I want to put my foot down, especially in times like this week when we have essentially had an almost diabetes free week.  I have gained so many new friends in these past five months, and the prayers that have been sent up for my family have been immense.  It is so unbelievably astonishing how many people think of Carter and my family on a daily basis.  I don’t know where I would be without the support and love, it helps me get through my day, and enables me to be the best mom I can be to my children.  I know that change is inevitable and I have to embrace it, though reluctantly, however, I cherish the moments when things appear to be what they used to be.  I am grateful to be winning when it comes to the trial, but am so thankful when I am able to live a moment in the life we once had.  Having a week where blood glucose numbers were easy and great, made me worry less about Carter.  I enjoyed every moment we shared together this week, and basked in the love he and his sister displayed for each other.   Watching my children care for each other, helps me to find the strength I need in order to get through the times when my sensitivity overwhelms me.   I have complete faith, that eventually we will be able to all enjoy the great times and leave my exhaustion behind.

Diabetes Burnout

Carter Bloody Nose
Carter at the park – September 2013

I had heard about diabetes burnout, but didn’t understand what it all meant, until now.  Being responsible for a young child is hard enough, especially when they are under the age of two and when you have a four-year-old as well.  Then tack on Juvenile Diabetes to the under two-year-old and diabetic burnout becomes a real issue, quick.  It’s only been about two and a half months since my son’s diagnosis, and recently we went to a new endocrinologist and switched up the way we administer insulin.  We eliminated the intermediate insulin (NPH) and now we have an extra shot to give at lunch time.  Due to my son recently being sick with the flu, his blood sugar readings had been really high for the past two weeks so there were days when he was receiving four shots, as well as six to eight finger pricks to monitor his blood sugar levels.  All of the extra shots, and blood checks, and the fact that he was sick and now is teething, really led me quickly to feeling burned out.  There are the typical days every once in a while that I feel exasperated at what I now am faced with every morning when I wake up.  Most times I shake it off and proceed to the kitchen and get things set up to start my sons day with his first insulin shot before breakfast; lately, I have found myself feeling extremely burned out on the whole process.  It’s an interesting dilemma, being so fed up with something that you can’t get away from.  There is nothing I can do but face this thing that I hate every day, multiple times through out the day.  Don’t get me wrong, my son is worth it, it’s just lately I am tired of it.  There have been more tears as of late, it reminds me of that movie Tangled (one of my daughters favorites) where Rapunzel leaves the tower and goes through every emotion in the span of ten minutes.  I feel like that daily, multiple times throughout the day.  Burnout is real as a parent anyway, but when you add special needs onto your child, it makes the burnout more frequent, and deeper.  So at the end of the day, I chug through and allow myself the moments when I cry in order to alleviate the burn out feeling as best I can, but I also allow myself to feel burned out and not make excuses for hating the new tasks that plague my day.  Having a child with Juvenile Diabetes sucks, and it grieves you every minute of everyday.  I believe learning ways to cope through it will not only make me a better mom and caretaker, but it will allow me the ability to assist my son through his diabetic burnouts once he is older and managing this on his own.  We are all in this together, and my love for my children enables me to dig deeper then I ever thought possible, especially when faced with a demon like Juvenile Diabetes.

Diabetes and the Flu!

Carter's 1st Birthday, his nap after the party - Pre Diagnosis
Carter’s 1st Birthday, his nap after the party – Pre Diagnosis

Having diabetes and the flu can be a scary thing.  Since we just weathered through the flu in our house, I now look back the ordeal with an enlightened mind.  This was the first “illness” that my son had post diagnosis and I will say that it wasn’t as scary as I thought it would be.  In the hospital, when he was diagnosed, the nurses spent two whole days teaching my husband and I about sick day management.  From checking blood sugars every two hours, to watching ketones with every diaper change, I was terrified of the first serious illness we were to encounter.  My son ran a fever for 24 hours straight, and luckily was keeping fluids down.  Then he threw up a few times and had diarrhea, all in all everything was OK.  I monitored his blood glucose levels, which due to him fighting the bug were high, and monitored his ketones (he had only slight ketones present in his urine), beside those two factors it was like basic flu management.  The one frustrating thing, I found, was the fact that his blood sugars were a lot higher.  I’d be doing everything right, and he would still need 4 shots a day.  It was hard to not feel discouraged, like I was doing something wrong.  All in all, we made it through, and I must say the biggest thing I’ve gained after this diagnosis for my son, was a new found appreciation and respect for the Pancreas!