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Our Daughter's Journey with T1D

Our Daughter's Journey with T1D-Part 3

8/7/2018

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​Time was finally here for us to see the Endocrinologist. I thought, finally, some answers or even changes. NOPE! Right when the Dr walked into the room he said, "I'm going to treat her for Type 2 Diabetes." What??!! I asked him why. He said, "What makes everyone think she has T1D and not Type 2?" I said, well that's what she was diagnosed with. She's not overweight, doesn't have other medical problems that would lead to Type 2 and it doesn't run in the family." He said, "Well I'm treating her for T2D despite what everyone thinks." I asked if he was going to run tests first, perhaps look at her medical record since he didn't even bother to look at that at all. He said, "No." So I grabbed my daughter's hand and said, "You will not be treating my daughter. I don't care how good you think you are. You failed miserably in my book. You didn't even try to build a relationship, you haven't even made eye contact with her once, you didn't bother to look at her medical records or do testing first. I'll be damned if you think you're going to just blindly treat my daughter for something you THINK she has without further testing." My daughter and I left. 

When we returned back home, I called her primary Dr to see if we couldn't get scheduled with someone else. He set it up. We showed up to her appointment. And much to our surprise, she's not even seeing and Endocrinologist. Her appointment was made with an Nutritionist. I was so upset. Do you know how many Nutritionist she's already seen? We had the food part down like no one's business. We needed an Endocrinologist. Why was that so hard for people to understand?!

So we continued to get pulled in this direction and that direction. Mind you, we live in a small town so there are zero Specialists around here. You either drive 2 hours if you're lucky or if not, then you drive 4-6 hours depending on where you're being sent. 

This is my daughter's life and health. Did no one care? 

Our search for a Endocrinologist continued with hopes we'd find someone who actually cared about our daughter's health. That search proved to be difficult. So here we are, waiting again, while her blood sugars continue to stay high.
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Our Daughter's Journey with T1D-Part 2

8/7/2018

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The first few days home from the hospital were overwhelming until we figured out a routine. Our daughter was put on a sliding scale for her insulin(Novolog). She had to take 1 unit of insulin for every 15 grams of carbs that she would eat, plus any additional insulin when she needed to correct her blood sugar if it was too high. 

Among the many things she was sent home with, The Calorie King book was now her bible. Any food you could imagine is in that book. It even includes restaurants for when dining out. Counting her carbs has been so easy because of this book. 

At her one month check up, her blood sugars were still high even though she was taking the right amount of insulin for everything she ate and when she needed to correct any highs she had. Her Dr. decided to put her on Lantis, a 24-hour acting insulin, 5 units every night at bed time.

Over the next few years, the amount of Novolog she needed to take, changed every single time we went in for her 3 month checkups because her A1C was always high. A1C is what her blood sugars for the past 3 months. She went from taking 1 unit of insulin for every 15 carbs down to 12 carbs, 10 carbs, 8 carbs, 6 carbs. It was getting to the point where she couldn't eat anything at all without taking insulin. Protein is free for her, which means she doesn't need to take insulin for meat, eggs, nuts, anything high in protein. 

They also upped her units of Lantis from 5 units at night to 10 then to 15. She started complaining that the Lantis was burning when she would inject it. We even made sure to alternate the injection sites so scar tissue wouldn't build up. If scar tissue builds up and insulin is continued to be injected in the same spot, the insulin just sits there instead of making its way to the pancreas. 

My motherly instinct starting kicking in and it was kicking hard! Something was wrong. I just knew it. It's been a few years now since she's been diagnosed and all these changes and her blood sugars were still high. So I researched the best Endocrinologists around us. I made an appointment and waited for that day to come.

I felt helpless, I didn't know what to do to help her get her blood sugars on track. I was there every time she took insulin. She was independent and wanted to do everything herself but I double checked everything before she took her shots. Something wasn't right and I couldn't wait for the day of that appointment. It felt like the longest wait of our lives.
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Our Daughter's Journey with T1D-Part 1

8/7/2018

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June 18, 2010 changed my daughter's life forever. I remember that night like it was yesterday. She woke me up that night informing me that she was having troubles urinating and mentioned that it burned a little. I took her to the emergency room because I didn't want her to wait until the next day to TRY and get her in to see her Dr. 

We arrived at the emergency room. After telling the Dr and nurse what was going on and that I thought it may be a urinary tract infection, they tested her urine. Those tests don't take long at all and I just knew we'd be going home soon. 

The Dr. came in with results we were not prepared to hear. "Your daughter's urine shows a large amount of sugar and her blood sugar levels are over 500. You're daughter, we believe, is diabetic. We are going to transfer her over to the children's hospital as they have Pediatric Endocrinologists there. She will be transferred by ambulance and you are welcomed to ride with her." I just sat there. No words. Blank expression on my face. "Ma'am?" I heard the Dr. say. I looked up at him. "Why don't you and I go into the hall and speak. My nurse will stay with your daughter." I looked at my 10 year old daughter, touched her hand, smiled and told her I'd be right back. 

Out in the hallway, the Dr. repeated everything he already told me. I interrupted him and said I needed to call my husband. I ran to the family waiting room and called my husband. When he answered the phone, I couldn't say anything, I was crying. I was clearly freaking my husband out by not speaking. I finally said, "Our baby has diabetes." My husband fell silent. Then said he would call my mother and have her come to our house so she could watch our other two children.

Wiping my tears away, I headed back to the room my daughter was in. I sat next to her on the bed. She asked me if I was okay. I told her yes. She knew better. 

When my husband arrived at the emergency room, it was time to be transferred to the children's hospital. He followed us there. They already had a room waiting for her and there were so many Drs. and nurses there greeting us. She was then officially diagnosed with Type 1 Diabetes.

We spent the next 3 days at the hospital. Seeing numerous Drs., Dietitians, and Endocrinologists was really overwhelming, but they would not let us leave until we went through all the diabetic education. We were given a HUGE binder full of information on T1D. She was given supplies, insulin, a special diabetic teddy bear, and so much more.

One of the days that we were there, our daughter was coloring. When she was finished, she asked if she could hang it up on the bulletin board that was in her room. I grabbed it and hung it up. It wasn't until after hanging it up, I realized what she did. She colored a page of a butterfly from a coloring book and wrote "Diabetes isn't the worst thing that could happen to me." The tears started welling up in my eyes. It amazed me that my 10 year old daughter was stronger than I was in this situation. 

One of her nurses asked if she could make a copy of the picture my daughter colored to hang in the hallway as an inspiration to other children with T1D. 

We were finally released to go home and yet, I was so nervous to leave. Leaving would mean that we would no longer have Drs. and nurses around us 24/7. We were officially on our own now and I was panicking. 
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