Ava’s Story – Type 1 Diabetes Diagnosis

By: Heather Richards

The Diagnosis

On Sunday, July 26 we went to bed like normal. 8:00pm for the littles and around 10:00pm for us. We tucked Ava in with her water bottle and then went about our night. Around midnight she was up to use the restroom. Well of course because she’d completely finished her whole bottle of water! About an hour later she was up asking for more water. I trekked downstairs and refilled the beloved bottle and tucked it back into bed with her.

About an hour later (this is no joke) she was up to use the restroom again. How in the world was her water bottle empty…AGAIN?! Another trek downstairs and she was tucked back into bed with her water bottle. I crawled back into bed and said to my husband “I don’t care what anyone thinks anymore. Something isn’t right and I’m calling the doctor in the morning.” Maybe she was just self-soothing, but she was 5. Did they still do that at age 5? I didn’t think so.

I drifted off to sleep wondering if I was still over-reacting and still truly undecided if I’d actually call the doctor in the morning. I didn’t want them to think I was being completely ridiculous. Monday morning came and we went about our day as usual. I dropped my littles off at the sitter’s house and I went to work battling the entire drive there with myself. To call or not to call?

When I got to my office, thoroughly exhausted, I decided to call. What can it really hurt? They can just tell me to relax and that she is totally fine. I called the nurses line and left my message: “This is Heather, mother of Ava. I’m calling because my daughter has been constantly begging for water, gets up multiple times throughout the night to use the restroom, and I just need to know if I’m overreacting or if she may have something going on with her. I know a sign of diabetes is excessive drinking, but I don’t know much about it. Please call me back and reassure me she’s fine.” I received a call back within 30 minutes. The nurse on the other end told me they wanted to see Ava that afternoon and she should come with a full bladder because they were going to do a urine test. I was satisfied with that. The urine test would prove that I was being ridiculous and we could go back to figuring out how to handle this strong willed and very thirsty child.

When we arrived at the doctor’s office they had Ava use the restroom right away. They could see she was about to float away. They did the normal weight check (37 pounds, interesting since 1 month prior she was 41 pounds, but what do I know?) and temperature check. We were all still smiling and just hanging out in our room waiting for the results.

The nurse opened the door and walked passed me as she whispered “there’s a lot of sugar in her urine” and she gave me the ‘I’m so sorry’ face. I was still completely clueless. OK, she has sugar in her urine. So? What does that even mean? The nurse told us she needed to check Ava’s blood sugar with a meter. THIS I understood. My papaw had diabetes and he had to check himself a couple times a day. They got the meter out. Told Ava what they were going to do and then it happened. HIGH We believe Ava is a Type 1 Diabetic.

They would like you to go home and pack a bag because you’ll be spending the next 2 days there.” Um excuse me, but what? This is NOT how my evening was supposed to be going. I pleaded with her to let us go to ‘Back to School’ night at Kitley. Ava was supposed to be starting Kindergarten on Wednesday and she gets very anxious so she needed to meet her teacher before the start of school. The pediatrician called the endocrinology team back and since Ava was seemingly fine we were allowed to make a quick stop at the school, but we had to make it fast and get right to Riley Hospital.

That’s when it hit me and I could feel the tears start to well up. The nurses took my littles out of the room and I spoke alone with the pediatrician for a few minutes. She assured me everything would be OK but our lives were, indeed, going to be changed dramatically. I’m so thankful she is the doctor she is because she understands me and how I parent. She knows my kids inside and out and she knew we would be OK.

After some time with her, I rounded my kids up and began making a million phone calls. I had to call my husband and let him know he’d be manning the fort for a few days because Ava and I would be at Riley. I had to call my parents and see if maybe mom could come down and help with Keegan. I had to stop at the school and meet the teacher and let her know Ava would be missing the first day of school but she would start the second day. I had to call my boss and tell him I would be gone for the next two days. Have I mentioned how grateful I am to have such amazing people in my life? Truly, the best. Riley Hospital for Children…

On our way home from the pediatrician’s office we made a quick stop by the elementary school and met Ava’s Kindergarten teacher. It was complete and utter chaos. Here we were, brand new to the school, trying to find a brand new room, and a brand new teacher (to Ava), and the diagnosis of type 1 diabetes looming in the back of my mind.

Why was it so urgent for us to get the Riley Hospital?

What was type 1 diabetes?

Why did we need to be in the hospital for 2 full days?

I was still in complete denial of the severity because Ava seemed totally fine to the eye and I was completely uneducated about what type 1 diabetes actually was. So, in an oblivious and chaotic mess, we met Ava’s teacher and headed home. When we got home I had to explain to Ava that we were going to spending a few days at Riley Hospital. She kept urging me that she didn’t need to go because she felt fine! I got my bag packed and Ava grabbed a few of her special things from home. I made sure I had a phone charger because I knew I’d have to spend the next hour or so talking to my husband and making other phone calls to family.

When we arrived at Riley Hospital, we were greeted with smiles from all the staff. The check in process went quickly and smoothly and they already had Ava’s room ready for her when we got there. I was given paperwork about our stay and told that I would endure 2 days of rigorous training on how to treat Ava. As I sat there going through the bag of “goodies” they had given us reality was starting to set in. I didn’t cry, I had to be strong for Ava, plus I am a firm believer that all the prayer warriors I have on my side were working overtime, praying that I stayed in good form for Ava. She wasn’t scared or sad that we were there, just confused. She stated to me several times, “Mom, I’m fine. I don’t feel sick, why do we have to be here?”

The nursing staff helped us to get all settled in and asked us the routine questions so they could get our wristbands and begin the process of helping Ava get healthy. I don’t really remember the first steps that were taken that first night we were there. I do remember vital signs and lots of questions. The doctor on call that evening looked Ava over very well. He asked her if her belly hurt. He pushed and prodded and she just shyly smiled and held my hand. They checked her blood sugar again and it read 531. So dangerously high. Doc on call could not believe she didn’t feel sick. He asked her maybe 3 or 4 times if she was sure she felt okay. They asked her to use the restroom as often as she’d like and each time we needed to let them know because they’d be checking to see if she had ketones. What in the world were Ketones?

We were about an hour into being there and they’d given Ava insulin. I learned at that time that ketones are sugar in the urine. Ketones occur when the body starts using fat for energy instead of glucose because not enough insulin is available to use glucose for energy. They had to give her more insulin than her “normal” dose because her body needed to flush those ketones out. The nursing staff was absolutely amazing and tried to help us understand as much as possible as they went and did their testing and vital signs. Always with smiling faces, they cared for my baby girl.

The first shot of insulin went well. It was when they explained to Ava that she’d need these shots multiple times a day that she and I both felt reality hit. As you can imagine, my sweet little 5 year old was not happy to hear this news. They were checking her blood sugar every couple of hours and also checking her ketone status to see if they were flushing out.

These next several checks and shots were a real struggle for Ava. There is never a good time to have to pin your child to get them still enough to administer insulin. It was rough on my mommy heart, but I knew they needed to do it and I was learning very quickly how detrimental it was to her health. Through all of the battling and struggles of shot time, every nurse that entered that room showed Ava love and support. They never got annoyed or angry. They were 100% sympathetic and showed their genuine love for their job to her. Given the circumstances, the staff of Riley were absolutely the best and made us feel loved and supported.

Classes Begin

The next morning came rather quickly. We were up around 8am and ready for breakfast. The nursing staff came in and buckled down again with carb counts and information and the dreaded finger poke and shot. I was told that my first class would begin around 9am that morning. The next several hours were about to become real. I headed to my first class of the day. I honestly can’t remember which class was first because we’ve been doing this for a year now but I believe it was nutrition and how to read labels and count carbohydrates.

I would quickly learn that labels on food packages were actually there for a reason and they would become my best friend. I sat down with my handouts and a pen ready to take on the task of carb counting. I’m so thankful the meeting was a one on one because I was able to ask any and all questions and not feel silly. You wouldn’t believe what goes into getting an accurate carbohydrate count. Don’t even get me started on homemade food. WHAT?! You have to add up the amount of carbs in every single ingredient, then divide out portion sizes to get the amount of carbs per serving. Don’t even get me started on subtracting the fiber content on high fiber foods.

Deep breath in and out and onto how to administer insulin. This part seemed very easy to me. I fully grasped every part of the math to figure out dosages and I had previous experience with doing blood draws so I wasn’t afraid of the needles. The process to deliver insulin was different of course, use a fatty part of the upper thighs, back of arms, stomach, or buttox. Pinch the skin up in that area, poke, count to 10, release pinched skin, then remove the needle. That was a piece of cake. The equation to figure out dose easy: (BG-120)/80=corrective dose for blood sugar reading 1:15 for a carb ratio=food dose corrective dose + food dose = insulin amount The technical parts came so naturally to me.

I was gaining confidence in caring for my girl once I was able to take her home. That’s when I had a class on treating her if she were to go high or low. While I kept it all in tact while in class, I have to admit I was scared on the inside. I had no idea the side effects of highs and lows: seizures, unconsciousness, etc. All the different variables that come into play and how to treat each thing. Thank goodness we have a mighty God or I may have lost it. Again with the prayer warriors in my circle! I was taught about giving fast acting carbs in the instance of a low. Something that will break down quickly and bring her numbers back up. If she were to be alert but not able to swallow then I was taught that decorator’s gel could be squeezed into her cheeks and smooshed around. The sugar from that would absorb into her body and help to bring her back up. I had to remember to check her for the low and then recheck her after 15 minutes to be sure she was in safe levels.

I was then told to follow the fast acting carbs with a starchy carb: crackers, peanut butter, milk, etc. to help stabilize and hold her there. Then there was the glucagon shot… Unresponsive, unconscious, seizing, check blood sugar and administer this as quickly as possible. My mind was whirling from all the possibilities that my child could actually die from this. It wasn’t just a few checks a day. We had to check her regularly and keep a very close eye on every part of her day. Too much exercise or playing too hard could cause her to go low. not counting carbs correctly could cause her to go high. Highs have internal effects and aren’t as visually scary as lows can be but they are still a great cause of concern and she should not go high and stay there or it could send her into DKA.

What was DKA I would have to read up on that… Back to the room I went. It was time for dinner and it was my turn to count carbs and administer the shot for the first time. Counting carbs was easy, thanks to the nutrition on the menu. I’m so thankful they had all that information there because to figure that out on my own at this point was enough to make a person want to just sit in the corner and rock back and forth in a ball. I had the counts ready to go, I had the dose ready to go, the nurse had confirmed that we came up with the same dose and now it was time to give the shot. Yikes! “Don’t forget to expel some insulin first to assure there are no air bubbles. Pinch the skin. Give the shot. Count to 10. LET GO of the skin. Pull the needle out.” Boy was I nervous! I was actually going to have to stick my baby girl with a needle! Everyday. For the rest of her life. This couldn’t be happening. God please be with me…

Going Home

After 2 full days of training, the staff at Riley thought we were ready to head home to our new life. We packed up all of our things, said goodbye to the staff, headed down to the pharmacy to pick up the biggest bag of supplies I’d ever gotten from a pharmacy, and we were off. On the ride home Ava talked about how much fun she had at the hospital. Despite all the poking and prodding she loved it there. I had to agree with her. It was nothing short of an amazing stay. They had volunteers come around with a cart that looked like a castle and it was filled with toys and goodies that they distributed to all of the kids. We had a room full of guests and they gave each kid multiple little toys to tinker with. She talked about how comfortable the beds were and how much she was going to miss sleeping there (this I had to disagree with because I slept in a chair. Ha!).

We made it home and my OCD began to kick in . I had loads of pharmacy items and nowhere to put them. They had to be easily accessible because we’d be using them frequently but I didn’t want them to just sit on the counter. The hunt for cute baskets to store them on the counter was on. It didn’t take me long to get everything set up and put away. I was feeling really great about everything. We were going to be just fine.

Dinner time rolled around and I began to panic on the inside a little bit. I didn’t have a menu with nutrition labels on it like they had for me at the hospital. I had to figure this all out on my own. If I do too much I will overdose her and she’ll go low. If I do too little she’ll go too high and that’s not good either. All the noise from the chaos of our house was getting to me. Once it was quiet and the kids were occupied, I was able to think straight and figured out her dosing. Finger poke and shot done and onto figuring out how in the world I was supposed to brief the school nurses tomorrow when she started her first day of Kindergarten! Boy oh boy did I have a lot to do in a few short hours to get ready for this day!

Life has gotten easier since those first few days of diagnosis. We have gotten into our routine, we know how to handle scary situations when they arise, because they do arise from time to time. We have learned what works and what doesn’t and we also know that sometimes what works, won’t work. Life has changed, but we wouldn’t change any part of it because her diagnosis means we get to keep her around for many more years. Her health was dwindling in the days leading up to her diagnosis and now she is flourishing.

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Email: brittany@thediabeticjourney.com


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Published Date: Tue, 28 Jul 2020 12:52:05 +0000


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