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Our Story of Being Diagnosed with Courage: A Journey of Resilience and Hope

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Our Story of Being Diagnosed with Courage: A Journey of Resilience and Hope

In 2022, our family of five embarked on a journey to improve our health and make positive changes in our lives. We focused on losing weight, exercising more, drinking more water, and getting better sleep. However, during this time, we noticed some concerning changes in our youngest daughter, Kennedy, who was ten years old at the time.

Initial Signs: The Unexpected Changes in Kennedy

By December Kennedy experienced a significant growth spurt and started losing weight rapidly. She also began having episodes that seemed like benign seizures, a condition she had been diagnosed with since she was three. As time went on, friends and members of our community started commenting on how different Kennedy looked. We became worried when her weight dropped drastically into the sixties and she became excessively thirsty and clingy, no longer enjoying life.

In February of 2023 we decided to take Kennedy to her pediatrician, who noticed the weight loss and ordered a urinalysis and blood test. The urinalysis quickly revealed the presence of ketones, and while we were waiting for the blood test results, the nurse checked Kennedy’s blood sugar, which was alarmingly high at over 350. The pediatrician immediately instructed us to go to the emergency room.

A Trip to the Emergency Room: The Shocking Diagnosis

Initially, we were directed to a nearby hospital, but the nurse practitioner called us just as we were leaving and advised us to head to Children’s Hospital in Birmingham, which was over an hour away. They were prepared to admit Kennedy to the ER upon our arrival. As we made the journey, I couldn’t help but feel a mix of confusion and regret, wondering why we hadn’t sought help for Kennedy sooner. The drive felt never-ending, but we were relieved having Kennedy’s grandparents drive us to the hospital to offer their support.

Emergency room 02/07
Emergency room 02/07

When we entered the hospital, we were shocked to see a crowded waiting room with numerous patients. However, within minutes of signing in, we were brought to the back, indicating the severity of Kennedy’s condition. In our room, several healthcare professionals rushed in, inserting an IV, drawing blood, and discussing their preliminary findings.

It was an overwhelming experience, and Kennedy and I exchanged worried glances, wondering what was happening.

Emergency room 02/07
Emergency room 02/07

The bloodwork results came back astonishingly fast, confirming that Kennedy was in a state of diabetic ketoacidosis (DKA) and had been diagnosed with type one diabetes. This was unfamiliar territory for us, as we had only encountered type two diabetes in our loved ones. A nurse promptly hooked up an IV bag of insulin, but we soon realized that this was just the beginning of a long and complex journey.

A team of doctors informed us that Kennedy would be transferred to the special care unit, a step down from the ICU, due to the severity of her condition.

Special Care Unit 02/08
Special Care Unit 02/08

Throughout the night, Kennedy’s blood sugar levels were monitored, and she remained on the insulin drip. It was a frightening experience for her, as she had a fear of blood and needles, and now she was being pricked every hour. We managed to get some rest, and the next morning, a team of endocrinologists visited us to provide more information about Kennedy’s new diagnosis. It was overwhelming, but we were grateful when one of the doctors expressed a desire to become Kennedy’s primary physician.

Adjusting to a New Normal: The Challenges of Managing Type One Diabetes

As the day progressed, Kennedy received insulin and learned more about managing her diabetes through education sessions. We had to familiarize ourselves with counting carbs, checking blood sugar levels, and administering insulin. We were also reminded that type one diabetes can be both a slow and fast-acting threat to one’s health, as evidenced by the fluctuating blood sugar levels Kennedy experienced.

Once Kennedy’s condition stabilized, we were transferred to the Diabetic Unit, where she could move around freely without the IV. However, the emotional toll of the past few days caught up with her, and she had a breakdown. It was a moment of vulnerability and questioning why this was happening to her. Thankfully, we were able to find some solace in the hospital’s activities room, where Kennedy could engage in art and play video games.

Diabetic Unit 02/08
Diabetic Unit 02/08

As we received more education about managing Kennedy’s diabetes, we realized the seriousness of her condition and how crucial it was that we sought medical help when we did. Despite the challenges, we were grateful for the support we received from phone calls and gifts from friends and family. Kennedy’s blood work showed that there was still work to be done, as her A1C level was alarmingly high at 14+.

The following day, our doctor informed us that we might be able to go home if Kennedy’s condition improved. It was nerve-wracking because her blood sugar levels were higher than when we arrived at the hospital, reaching around six hundred. However, we had to prove that we could check Kennedy’s blood sugar and administer insulin before we could be discharged. Surprisingly, the responsibility of keeping our child alive came naturally to us.

Diabetic Unit 02/09
Diabetic Unit 02/09

As we awaited our discharge papers, the reality of the financial burden, the ongoing exhaustion, and the challenges of managing Kennedy’s condition set in. It was a humbling experience that brought us to our knees. However, we found solace in knowing that we were not alone, as there were many other children and adults facing similar challenges. We considered ourselves extremely fortunate to have Kennedy alive and doing well.

The Road Ahead: Our Ongoing Journey with Diabetes

Going Home!
First Endo Appointment

In the months following Kennedy’s diagnosis, we realized that while we could handle the medical aspects of her condition, we were unprepared for the mental health impact it had on her and our family. This aspect of our journey will be covered soon, as we continue to navigate how “Dia-bestie Adventures” came to be.

With love,
Kennedy’s mom
~Jen

Jen

Jen

Kennedy's Mom!

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