It has taken awhile to get to this post. Mostly because I have been trying to keep my head above water and get sleep. I have some time. Jeremy and the girls have been out trying to see see some ducks in Killbuck Marsh area. I have been breathing – taking a nap, letting laundry cycle through, and being in silence. It is needed. Now, I here I sit and try to consider how to start this. I guess I’ll just start at the beginning. You might want to get cozy. This is a long one and I didn’t want to break it up. I just wanted it all right here.
Thursday, February 18, 3am
Ellie came into our room crying. She often yells for us during the night or comes into our room – not able to fall back asleep, too hot, needs to go to the bathroom, etc. The difference was that this night she was crying and clearly actually needing something. She had wet the bed. Unheard of since she has been a toddler. She was embarrassed and felt like a baby. It was an understandable reaction for something so out of the ordinary. Jeremy and I worked together to get the sheets in the washer, her body washed, and tucked back into bed. We then proceeded to Google search what bedwetting could be a symptom of. It gave us a very limited number of options: “Disorders that are associated with bedwetting include urinary tract infections, diabetes, sickle cell disease, and sleep apnea.” Obviously, it could have been nothing as well – just a deep, much needed sleep in which she didn’t wake up to go. It’s not unheard of. However, two things stood out on the list – urinary tract infections (which I had A LOT growing up) and diabetes (which 3 of my double cousins were diagnosed with as kids). We decided that we would watch and see what we observed over the next few days.
Friday, February 19 – Saturday, February 20
Ellie said she felt no pain while going to the bathroom, which ruled out UTIs. So, we just watched. We noticed trips to the sink for water refills. We thought maybe that was because she had a slightly stuffy nose – maybe she was just thirsty? We noticed extra trips to the bathroom before bedtime. We attributed the latter to her being worried she would have another accident. But she was also getting up around 10:30 or 11 to go to the bathroom again. I also thought she was eating more, but again, she is a growing girl. She pounded down whole smoothies with pancake breakfasts. It didn’t really matter to me in that if she was hungry, she needed to eat. Just an observation.
I did, however, send a message to our pediatrician. We had an well visit coming up in a little over a week. I just wondered if she thought I needed to do anything or advice before then. It was the weekend, so there wasn’t a quick response. I thought I would give them until Wednesday and then call.
Sunday, February 21
We headed to church for worship. She brought along her 28 oz water bottle. She managed to drink all of that AND go to the bathroom twice during our hour of worship. Jeremy and I exchanged glances. Even Madison asked if she was okay. On top of that, she said she couldn't see the projection. When I questioned her further, she said she could see it, but it was blurry. Again, it could just be her glasses were dirty. Or it could be that she was fulfilling another sign of diabetes.
After lunch, I decided I should call my cousin, Kristin. She is type 1 since she was 7, and her daughter was diagnosed when she was 14. I figured I could pick her brain on what she saw in her daughter and do a small comparison study. I had tried calling her on Saturday, but couldn’t get ahold of her or my aunt Sherry; I didn’t pursue it then because it just seemed a little over the top. Today felt different.
Kristin talked about what her symptoms had been. She described her daughter’s symptoms, too. She said she was surprised they didn’t catch it sooner in Emily since both her and her husband, Matthew, are diabetic. But she said, it was the summer. Em was going to the pool to hang out with friends and they were running their son Josh to and from baseball practices and games. She asked what I was seeing. I went over what we saw. She told me that I really needed to go to CVS and get a glucometer. She said they are cheap – only about $30 for everything. Kristin reassured me it could be nothing, but testing her blood sugar would ease our worries and tell us one way or another if anything was going on. I countered, But Ellie is petrified of shots. This isn’t just a little deal. Do you think we can just wait? She said no, she wouldn’t advise waiting.
So, Jeremy and I decided we would heed her advice. Ellie heard Jeremy say he would go get “it.” She got really excited – What would he go get? Could she come? Was it a surprise?
And then our otherwise happy, carefree day blew up.
We sat the girls down and talked about what we were going to go get – a glucometer. And why we had to go get it – we wanted to test Elle’s blood sugar to see if she might need to go to the doctor to see if she had diabetes. You can sugar coat this stuff. You don’t just prick fingers for no reason. We had no choice. She started crying and getting scared. We talked about my cousins and how much fun they are, what all they still get to do, that they are just like us, except they wear machines to help them track their blood. We told her we didn’t know, but we needed to know. Madison was beside herself, too. We tried, but anyway you dice it, it doesn’t sound like the fun she was wanting.
After things we all collected ourselves, Ellie and I headed to CVS to try to find a glucometer. There is a wide selection of types and prices. I just asked for help – which I do often and readily when I can’t find something. The pharmacist who helped us was named Gilbert. He was amazing. He picked out the store brand (the cheapest) and gathered the equipment we would need. He then took time to explain what is diabetes using both big and small words. Ellie and I both got something out of the educational opportunity. He helped set up the machine, showed us the process, answered questions, and sent us on our way. (I later learned he is a diabetic as well. He said that he really wanted to just have us test her sugar right there, but he didn’t know us well and was nervous he would scare us off. While he wasn’t happy to see us there with all our prescriptions later, he did tell me he was glad we followed through with it.)
Ellie and I picked up Pizza Hut pizza for supper and went home. We were on schedule to have a movie night that night. So, we cued up Flora and Ulysses on Disney Plus and enjoyed some pizza. Kristin had told me to go ahead and test 90-120 minutes after eating. So, the real event began around 7:30.
It is scary. I had no idea exactly how to prick someone else’s finger. We had a clue how the machine worked, but we hadn't ever really tried it before.
That said, prick one did not get enough blood on the test strip.
Prick two yielded an error message.
I had to bribe her for prick three. I promised I would not retreat to the basement after she went to bed. I would stay upstairs the entire evening until I went to bed. I really hoped this finger prick would work because I had nothing left to offer. Thankfully, it did.
The meter read “HI”
We sent the girls back downstairs to watch the movie. I called Kristin.
She said, “I am so sorry, Erin. But you really need to take her to the ER.” I argued back that she was doing fine, seemed normal, nothing up. Kris said, “You need to go.”
I asked for her to explain what might happen when we got there – IVs, blood tests, etc. Both myself and Ellie needed to be prepared. She said it would probably all happen, and that we should plan to stay overnight, so pack a bag.
Jeremy went and told Ellie to quit eating her skittles (bribe for the second finger prick). And the girls came upstairs.
We explained what we would be doing and why. They both started crying. I told Ellie it would be a me and her adventure. I don’t know if it helped, but it helped me to rephrase it a bit. I put in a call to our after hours doctor and asked if we should head to the local ER or go directly to Akron Children’s Hospital about 40 minutes away. They said since she seemed to be fine to go ahead and make the trip to Akron; the other ERs would send us there anyway.
Somewhere in there, I texted my mom; Jeremy texted his mom. I sent a text to my principal that I wouldn’t be there. He put in for a sub for me. Details.
We hugged Jeremy and Madison good-bye and crawled into the van about 8:45pm. We arrived around 9:45pm. Ellie talked all the way asking questions, thinking through things, asking more questions. It is a lot to take in.
And our night just kept on going. We checked into the ER (after a bathroom break… confirming again the frequent urination symptom), gave our information, and met some amazing night nurses. The child life specialist that night was everything Ellie needed. Had we come after 11pm, she would have been gone. She gave Ellie “freezy spray” to numb her arm while they put in the IV. She didn’t flinch or even feel it. And the waiting began for test results.
The initial finger prick at the ER revealed a blood sugar level of 596.
10:30pm The official number came back as 532. Whatever. It was high. Normal blood sugar range is somewhere between 70-180. We were way off of normal. We were waiting on a test to know if she had diabetic ketoacidosis (DKA); this occurs when the body starts breaking down fat at a rate that is much too fast. The liver processes the fat into a fuel called ketones, which causes the blood to become acidic (link). If she did have DKA, then they would transfer us to the PICU. If she didn’t, then they would admit her to a regular room for the night. This test also came back negative.
10:40pm The child specialist returned with a cozy fleece blanket (thank you for the kindness of people who knot those things to give to hospitals), an adult coloring book, a set of markers, and a notebook for me. I was so grateful for the notebook. I thought of this as we were driving – I had nothing to write in. The notebook was a saving grace – a place to initially journal, later write down notes, and record questions that popped up throughout the day and night.
Monday, February 22 (from my journal)
12am A new nurse. Another finger prick. A new number 412. The nurse also gave her a shot of insulin. I thought Ellie would freak out, but she didn’t. Man, I was so proud of her!
12:30am Finally, we were moved to room 6215. Ellie is very excited about this part because she is able to ride in a wheelchair to get there. Pretty cool stuff.
2:30am Still up. Not sure if we are going to get any sleep. Ellie is watching Moana and waiting on a snack of goldfish crackers. I, too, am hungry, but think I’ll need to wait until morning. (Note to self: add snacks to the overnight bag next time. Hope there won’t be a next time.) Goldfish came! We had another blood sugar check – 312.
3am Given the green light to start going to bed. I am sleeping on this fold down couch. Ellie thinks this bed is much more comfortable than the one in the ER. I am just happy to be able to close my eyes.
4:10am Another blood sugar check – 214. Ellie is so tired.
6:25am Another blood sugar check – 91. We had a great nurse throughout the night. Before she left, she came in and pulled about 6 viles of blood out of Ellie, so the lab wouldn’t have to prick her again for their blood. She commented on what excellent veins Ellie has – maybe the best she’s ever seen! I am tired. We slept from 3-4:15am and 4:30-6:15. I am just hoping our brains will be fully charged and ready to take on the information. Jeremy cancelled his work trip. He is coming around 9am for our education.
7:45am Keytones normal (they were some present, but not DKA). This means no more IV to haul everywhere.
8:20am Breakfast at last! French toast sticks, apple juice and sausage links.
And then no journal during the day. Between nurses checking and visits from all the different members of her team, we had no time to breathe.
7:30pm We are finally alone. The morning stared off with a lot going on – blood sugar test, order of breakfast, shot of insulin, eat. This followed with me running to the cafeteria to get some breakfast. Jeremy called about 6:40 wondering where his rental car keys were; I had used them last. They were in my pocket; I had the van. He had no vehicle. Which meant he had to scramble to get a car to get Madison to school AND to be able to get up to the hospital. UGH! His mom came through and loaned him her car.
Jeremy got here around 10am just in time for the endocrinologist, Dr. Jamie Haidet; so nice, informative, and relaxed. She explained diabetes, glucose, and insulin basics to us. Then, we started patient education with the nurse. We were instructed how to count carbs, draw insulin with a syringe, give an insulin shot. Ellie really enjoyed giving shots to the fake skin they had.
We met the dietician, Lizzie; Ellie likes her hair. While it feels overwhelming, it also just involves reading labels and plugging recipe ingredients together to come up with total carbs. Ellie can eat anything, but she has to be aware of how much she will eat in order to get the correct dose of insulin prior to eating. This only gets tricky if she wants more to eat because it could require an additional insulin dose. We finally thought we were going to be done and the psychologist, Dr. Kevin, came in to chat. As the day progressed, Jeremy, Ellie and I were all learning how to record carbs and calculate insulin doses; it was a jump in with both feet approach… no time to kill.
Ellie was nervous about shots anywhere besides her arm. So, the child life specialist in this wing came to the rescue. She came bearing gifts – a very soft bear Ellie calls Bluey and a smooshimal Ellie named Stripes. She tried giving Bluey shots hoping that would help. It may have, but mostly those animals gave her something to hold on to.
We FaceTimed with Grandma and Grandpa Ediger and Madison. It was good for Ellie to process some things this way. It was good for Madison to see Ellie was okay. Jeremy left around 6pm because Madison is part of a Kindness Club at school, and they were being recognized at the school board meeting. He’ll be back tomorrow. Ellie ate a really light supper; I think she is tired and not very hungry. I had to give her her insulin shot in her leg, which was a new place for the shot and a new person giving it. It went okay, but she said it hurt. I am absolutely exhausted. I am ready to fall asleep and it is only 7:40pm. It should be a more solid night’s sleep.
Tuesday, February 23
Ellie had a great night’s sleep. We went to bed at 10pm. She was pretty much a rag doll for the 12am and 4am vital checks. She did wake for the 2am glucose check – 169 = no insulin! Her morning didn’t start til 7:45! My night was definitely more restless, but it was still more than 3 hours. Plus, she is eating a good breakfast – fruit loops and Greek yogurt.
(Journal stops. Education starts.)
Jeremy came around 9:30ish. Dr. Haidet came to talk with us. I had a bunch of questions, and she only had a small agenda of items. But she sat down and talked for around an hour – not once making us feel like she needed to rush out of there. I so appreciate the patience and understanding of not only her, but all of the people we have worked with. We did our last two modules of learning with the nurse. Ellie took the final quiz and got an 11/11! Pretty impressive girl right there! Then, we waited for all the ducks to be in a row so we could check out and head out. One of the major hold ups was making sure that CVS had all our prescriptions ready to go. While I really like the pharmacists at CVS (Gilbert and Jennifer), the prescriptions have been a minor headache. We were finally able to check out around 5.
We headed to Orrville and stopped at Taco Bell for supper. We went through the drive thru and ordered our food. I parked the car, passed Ellie her food, and started eating. After one bite, Ellie said, “Mom, aren’t we supposed to check my blood sugar?” Oh my goodness! First time on our own and messed it up. It did not bolster my confidence. We paused on the eating and started the process. We took the blood sugar test in the car. Counted the carbs, figured the insulin dose and gave the dose. Mission accomplished. On to the food.
From there we went to CVS to gather all our “stuff.” Our new normal. The cost wasn’t as crazy as I thought it would be; however, I have some pretty good insurance. As I am finding out, it is even better than I thought. On my Medical Mutual Plan, I have the Diabetes Management Plan which allows Ellie to get her medical equipment (lancets, needles, continuous glucose monitor, and insulin pump) for almost free. Looks like I’ll be working at my job for awhile…
Our last stop of the night was to pick up Madison from the Paulis house. Heather had asked if we needed anything, and it worked perfectly for Madison to go over after school. I was so grateful for that. It helped me to know that Madison was making a special memory and her mind was occupied with a friend. Ellie was excited to see Bailey (her friend at that house). After a short conversation, we headed home for our own beds.
Came home and checked blood sugar. Her number was above 250. We called the Diabetes Center to ask for guidance.
2am Needed to wake Ellie for her blood sugar check. Her number was again over 250. Our instructions were to start checking keytones if she was over 250 two times in a row. We called the doctor on call; it was Dr. Haidet. She said it should be fine, don’t give more insulin, no need to check keytones.
Wednesday, February 24 – Sunday, February 28
Ellie and I stayed home from school on Wednesday and Thursday to figure things out. It sounds like it would be so nice and relaxing, but I felt like I was running around the house like crazy – picking up stuff, cleaning a bit, calling insurance, calling doctors, finding a home for all the stuff. Our new drop center for stuff.
Called the Diabetes Center for the 3rd time in less than 24 hours to ask advice on how to better prick her finger. Figured it out.
Friday went well for Ellie at school. She did well with her trip to see her new best friend, Diann King (school nurse). She had a great day back. She had been nervous about her friends not wanting to be with her or treating her differently, but she said it all went really well. Diann had gone to all the third grade classes to explain what diabetes is so they would know Ellie was fine, why she needed to see the nurse, and how to be a good friend. I think that really helped.
The weekend was just the weekend.
Monday, March 1
Today, we met virtually with our entire team. Grandpa and Grandma Ediger and Grandma Yoh joined us for their educational training as well. The nurses were very thorough – reexplaining some things, sharing some new things, and answering questions. The dietician reiterated that Ellie can eat whatever she likes, she just needs to cover for it with insulin. She did encourage an overall well-balanced diet, but she said that didn’t mean Ellie could never have candy or cake again. It lasted all morning. All afternoon, I spent on the phone calling the insurance and the durable medical place we are working with trying to get things going for a DexCom G6 continuous glucose monitor for Ellie; this device would give us a continuous reading of her blood glucose levels AND pretty much eliminate finger pricks. I am still in a long conversation with them trying to figure out why it is taking so very long. I have little patience. I saw this on Pinterest one night after a long and frustrating conversation about the DexCom with the durable medical place. It was under teaching emotional regulation to students. I felt like it explained my whole world right now.
Tuesday, March 2 and beyond
We have been at it for almost 3 weeks now. We are getting better at it. Ellie is doing her own finger pricks, setting up her own insulin pens with the correct dose, and helping to figure her carbs at every meal. We even remember a few carb numbers from memory! We have been watching high numbers come down and lower numbers stay a little too low.
We have communicated a lot with the Diabetes Center to make adjustments a couple times a week to the long lasting insulin and the carb ratios at each meal. We are trying to understand how to manage it alongside exercise that is happening more now that it is nice out. It is definitely a journey. It hasn’t been a walk in the park and maybe one day I will blog about that aspect, but I wanted to get the details down in print to start. The emotions may trickle out in later posts.
We have been so blessed by people reaching out in different ways. Cards, prayers, texts, conversations, and flowers. These flowers were a gift from Cindi Clark at church; they had been on the alter during the service. They have brightened our bathroom and reminded us of hope and beauty every day for almost 2 weeks now. God has been good.
