Day 23: Diagnosis
Ironically, today’s ‘category’ is diagnosis and today is my daughter’s diagnosis anniversary. Today we celebrate 5 years of living with Type-1 Diabetes.
Signs and symptoms of sudden onset of type 1 diabetes:
- weight loss
- increased appetite
- increased thirst
- increased urination
- blurry vision
From the time my daughter was born she would eat and pee constantly. When she was 3 and we were potty training, she was always going to the bathroom. She was always drinking a LOT of water. She would drink water all day and all night, she was always wanting water. She was always getting up in the middle of the night to go potty. Since these signs/symptoms were already there, nothing was ever thought of it.
My daughter was six years old, she had been sick most of November 2008. She had gone to a friends house after school one day and had been playing around with exercise equipment and somehow cut her finger, no big deal. But the small cut kept getting worse, despite the fact that she was on antibiotics for strep throat.
I remember November 3 vividly, we had dinner at our church like we always do on the first Monday of the month. One of the public health nurses, a member of the congregation and a friend, was at dinner that night. My daughter only had a few bites of dinner she just wanted milk, which had always been normal for her since she was a baby. She drank 3 small glasses of milk (approx 12 oz) and went to play with the other kids. She threw up after the dinner was done and we were helping to get things cleaned up. The public health nurse was still there, I remember her helping me with my daughter during this time. We talked about how my daughter wasn’t ‘growing’ like other kids and how sometimes she just wanted to drink water or milk instead of eat. That I’d had her in to see the family doctor about it and we just brushed it off saying when she is hungry she will eat. That we can’t force them to eat, it will start bad habits.
A few days later, my daughter was complaining her ear hurt and her stomach hurt. The stomach ache went away but the ear ache remained. The sore on her finger getting worse. Back to the doctor we went on November 18th. They checked over her finger, they checked her ears, they checked her throat. Her ear was infected and her tonsils were huge and red, and the sore on the finger infected. We went home with another antibiotic and instructions to soak the finger in warm water with epsom salt.
A few days later, November 21st, the sore on the finger oozing pus and very inflamed. The accompanied complains of severe aches of ears, throat, tummy led us back to the doctor. They looked her over again, said that the other prescription should have helped already. Told me to discontinue previous antibiotic and they started her on a new one, to continue with the warm water soaks on the finger. I took her to school, she cried. She looked so tired, she said she was tired. She just wanted to go home with her mommy, to cuddle and sleep. I bribed her with ice cream to go to school for the last 4 hours that day. I went home and went on with my day. After school we went for ice cream. She ate a few bites, but she really wanted water. We played some games, we went home and went to bed.
The next few days are a blur of my daughter vomiting, running a high fever, crying, drinking water or whatever liquid we could get in her, and her sleeping a lot. By Sunday night, November 23rd, I knew something was really wrong with her. She looked ashen, her eyes looked sunken into her head, she looked so small and fragile. She tried to eat dinner and threw up all over the floor when she couldn’t swallow her first bite. I cleaned her and the mess up, then I started putting the leftovers away while my other two children ate their dinner. As soon as they were done eating their dinner, we got into the car and drove to the ER. She was so weak she had to be carried to the car and then into the ER.
When we arrived I told the triage nurse that I wasn’t going to leave until they figured out what was going on with my daughter. They told me multiple times that she’s probably just having a reaction to the antibiotic and that the doctor will probably just change it and send us home. I argued and fought with the nurse to do a urinalysis, since my daughter had to go to the bathroom anyways. They said that there was no point, that it’s a waste of time. I remember telling the nurse that it’s my daughter, my insurance, my money and I wanted it done NOW! The nurse finally said she would go talk with the on call doctor. I heard her out in the hallway telling the doctor that I was insisting on having a urinalysis done on my daughter. The doctor told her that it’s not necessary but that since the mother is insisting on it to go ahead and do it. So I carried my daughter to the bathroom to help her, after we were done in the bathroom the nurse put us in a room. My daughter looked so small on that hospital bed, she weighed 30 lbs. She had lost quite a bit of weight, she was skin and bones.
About thirty minutes later, the doctor came in and asked me if there was a history of diabetes in the family (yes I have two brothers and an uncle, I said) and said that he would like to have some blood drawn, that the urinalysis showed very large ketones and very large glucose. The nurse came in and did a finger poke, my daughter cried but had no energy to move. I remember holding her closely to me and sending out a text message to my mom and a brother about the diagnosis. Her blood sugar was higher than the machine could read. A lab technician then came into the room to take some blood, she poked a few times before she could finally get something because her veins kept collapsing. They sent the labs off, and we waited.
When lab results finally came in, the doctor told me that her Hemoglobin A1c (shows the average level of blood sugar (glucose) over the previous 3 months) was 13.1%. It should be 5.6% or lower. Her electrolytes were extremely out of whack. Her blood glucose was over 800. It should be lower than 120. They said she would need to be admitted to the hospital, but that they couldn’t admit her because they don’t have a pediatric endocrinologist and she would need to be transported to Children’s Hospital. I said ok, I’ll take her there. They told me that she was too sick and needed to be transported by ambulance and that they were on the way there.
My other two children would go home with their uncle for the night. He would take care of them, while I took care of their younger sister. They too were scared about what was going on with their sister.
Once we got into the ambulance the paramedic gave my daughter a cute red teddy bear to hold as they started an IV on her, it took 3 tries before they finally got the IV in her arm. She was scared, I was scared. We rode in the ambulance for over an hour to the hospital. They started an insulin drip in the emergency room there, then transferred us upstairs to her room for the next few days. And so our journey with diabetes had begun. I overheard the doctor telling the nurse to keep a close eye on my daughter that she might not make it through the night. I remember being scared and not showing it, because I didn’t want my daughter to know how sick she really was.
My daughter slept all night and the next morning, only moaning when they did blood draws and finger pokes for hourly lab work and blood glucose checks. In the morning I explained to her that she had diabetes like her two uncles and would need insulin for the rest of her life to keep her healthy. She didn’t want the shots of insulin, she didn’t want her blood glucose checked but she did it. By Tuesday she was finally starting to feel better, she was getting color to her face again. She was getting up out of bed and playing games and watching tv, but she was still very tired and sleeping a lot. She said something that has stuck with me since that day, “Mommy I don’t like shots, but they make me feel better.” Each day at the hospital she got stronger. She got a teddy bear to learn to give a shot to, and some large syringes (without needles) to play with.
I met with the CDE and dietitian where I learned to count carbohydrates, how to draw up insulin, how to give insulin shots, what the symptoms are for high blood sugars or low blood sugars, everything I needed to keep her alive. They sent us home with insulin to carbohydrate ratios, a correction scale, 2 vials of insulin (one Novolog and one Lantus), a glucose meter and a bottle of strips, a huge 3-ring binder of information, a fridge magnet with sick day management, emergency contact numbers, and fear of doing this alone. I was not ready for real life, for being on my own. What if I did something wrong? I had to do it, I had to jump in head first and do it. There was no other option, no other choice. I was responsible for keeping my daughter not only alive but LIVING! They didn’t teach us how to live, this is something we had to figure out as we went on with this journey. They didn’t tell us how much things would change, it’s something we had to figure out each day with each new adventure. She was able to go home on Thanksgiving Day.
Thanksgiving means more to me now, than it did before. Thanksgiving is a reminder of how close I came to losing my daughter and how thankful I am for the discovery of insulin, without it my daughter wouldn’t be alive.
This has been a long journey. Five years. Almost half of her life. Five years of living with this chronic disease. Five years of educating others about this chronic disease. Five years of living with Type 1 Diabetes. Five years of wishing for a cure. Five years of hoping and staying strong. Five years of learning more. Five years of pokes.
FIVE YEARS STRONG!