You guys, I’m ready for a quiet period of rest around here. Maybe a year where no one has any health issues, the house just keeps it together and the grass stays alive, and the children just grow and everyone is happy and everything is organized and perfect. That’s totally realistic, right? It seems that as our family grows, we inch further and further away from that pipedream. And I know that’s just the way that life goes-it’s just that I felt like we were heading into recovery and like chutes and ladders we just slid right down another chute.
For the last few weeks I’ve noticed Stella becoming more and more lethargic. I’ve felt that way myself because of the heat so I chalked it up to adjusting to summer. I measured her on our growing stick last month and she and Paisley have both grown quite a bit in the last year-but nothing unusual. She has always been so thirsty, but we all are with the heat. When we went to Salt Lake for the 4th of July I noticed she needed to pee all.the.time but she was drinking all.the.time so I made a note in the back of my head to keep an eye on her for a bladder infection. She would complain of aches and pains here and there, but they both like to do that so I didn’t think much of it.
Finally a third person commented to me about how much Stella has stretched out recently. My friend had gone to Seattle for a few weeks and returned and couldn’t believe how much Stella had thinned. That Friday night we were out with friends and instead of running around with the other kids, Stella kept close to me and wanted to snuggle. I could tell she didn’t feel well but there wasn’t any other symptoms or fever so I just snuggled her and figured the fever would come that night. Instead, she wet the bed, something very unusual for her. When I got up the next morning these symptoms started to add up in my head. Always thirsty, always peeing, lethargic… I put her on my scale and she had lost 5 lbs. Google confirmed what I was fearing at this point and I posted on facebook asking if anyone had a glucometer I could borrow.
My good friend and neighbor was quick to respond and ran over to her parent’s house to borrow theirs. She came to talk to me beforehand and I told her I was over-reacting, it was probably just a bladder infection and growing because I really didn’t want it to be the thing it was starting to look like. I really, really wanted to be wrong. Stella was out with Jon and Paisley at the hardware store and getting lunch, doing totally fine and wouldn’t be back for a minute so there was no rush to grab the meter. She hurried anyway and came back with a glucometer around the same time Stella came home.
We tested her and instead of a number the meter read “HI.” We both just looked at each other because this made no sense and she called her Mom and I checked my own sugar to make sure the meter was working. It was. Her eyes got really big as she repeated “so just go straight to the Emergency Room” while on the phone with her Mom. Apparently if the meter won’t read, your blood sugar is above 500 (super dangerous) and you need to go in ASAP. I tried to get on the phone with InstaCare as Debbie kept repeating “You need to go to the Emergency Room, not InstaCare.” You guys, we all need Debbie living next door to us.
We were in the middle of Saturday chores, I was a mess, the house was a mess, the kids were a mess and I couldn’t wrap my brain around it. So I took a 2 minute shower, Jon brushed Stella’s hair and Stella and I headed to the emergency room. Thank heavens it was a slow day. We walked in and I told them my child was tired and had a blood glucose reading of over 500. The tech looked at her surprised and said they needed to verify if that really was the case. We went directly to triage and they poked her finger there as well. She read “HI” again, which on their meter means that she’s over 600. Everyone started moving really fast at that point. This huge teddy bear of a tech knelt down while he put on Stella’s bracelet and said “You can call me Uncle Robert, we’re going to get you all ready because you’re going for a ride.”
They put us in a Trauma Bay instead of a room which set off a red flag in my mind. A Trauma Bay usually means that you aren’t staying and that things are serious. Techs and Phlebotomists flooded in and started trying to put in IV’s and get her vitals. Carl walked in the door as her nurse and I immediately hugged him. So many sweet tender mercies happened and seeing his familiar face was one of them.
Stella did amazing through all of this and only really screamed a little (having people starting IV’s in both arms at the same time is a reason to scream). Luckily they were able to start an IV and begin the process of slowly bringing down her blood sugars fairly easily. Once her blood work came back we found out her levels were above 800, a terrifying number. The doctor could not believe her breathing wasn’t effected and that she was so coherent. Both Carl and the Doctor were quick to warn me that there was a good chance we would be life-lighting to Primary Children’s (a children’s hospital 4 hours north of here), but possibly just transferring to Pediatrics over at the Old Hospital.
She got really stoic in the ambulance during the ride and it freaked me out a little. She had just started to perk up a little in the ER and so seeing her get very serious and sad again was rough. We arrived at the Old Hospital and were greeted by our Family Doctor who I love, Dr. McIff. His on-call was out of town so he came in himself, which was so kind of him. He reviewed everything we went through and confirmed that this was absolutely Type 1 Diabetes and that she would have this for the rest of her life.
While the nurses were checking her in and getting her settled Dr McIff told me he was so glad I caught this so early, and that it was such a tragedy about the family that had recently lost their daughter from it. I asked him “Who?” and he was surprised I hadn’t heard of it. He said her name was Kycie and suddenly like a ton of bricks the weight of how serious this all really was hit me. I had no idea Kycie had died from Type 1 Diabetes, all I knew was that she had died and that it had deeply effected the community-you can still see her stickers on the backs of cars and posters up for her in Southern Utah. The nurses handed Stella a stuffed animal with her tag on it, a gift, and my Mama heart broke.
Jon had been following along with everything and was finally able to come by. He and our friend gave Stella a blessing and we just tried to process everything.
We made ourselves at home and spent the night. The next morning I asked Stella what she wanted from home and she said “Paisley!” So I went home and I brought back Paisley. The first thing she said was “Paisley, I have a hard life now. I have to get shots all the time. And here at the hospital they bring you stuff like servants!” Jon and I started learning how to draw up her shots, count carbs, dose for corrections and give her shots. We learned more about measuring her blood sugar and what care will look like from now on. A Diabetic Counselor and Educator came and taught us about sick days and school. It was absolutely overwhelming. The girls even got to practice giving injections to dolls!
In the meantime her blood sugars were coming down…but then they would spike and then they would sink. And then we started talking about going home and I decided we should probably just live at the hospital because if they couldn’t get her sugars to even out, why in the world did they think I could do it?? We ended up staying almost 4 days and coming home. I finally really cried at Harmon’s on the way home. I was exhausted, overwhelmed and terrified and then the pharmacist started piling up all of the prescriptions and tools necessary to manage her disease and I completely lost it. I wandered around Harmon’s lost-what had carbs? What carbs were good? Where does yogurt rank on the glycemic index? In all of my days of managing food I’ve counted fat, I’ve counted calories, I’ve looked at sugar and nutrient density but I’ve never really paid super close attention to carbs.
For example, did you know a banana is around 30 carbs? That means Stella (based on her current dosage-it will vary for much of her life) needs a full unit of insulin if she wants to eat a banana. In our current Paleo and Keto loving culture we’ve been taught that carbs are bad. The truth is, carbs are not bad, carbs are necessary to sustain life. Without them you begin to dig into your fat stores and for a 5 year old we really don’t want that.
So what does diabetic diet look like for a 5-year-old? It looks almost exactly the same as a diet for any 5-year-old. Most people assume she’s not longer allowed to eat sugar and we have to restrict her. That’s Type 2 Diabetes. She has an auto-immune disease that is in no way caused by lifestyle, and only caused by her pancreas just deciding to quit. All we’re doing is giving her the insulin her body decided to stop making.
Life at home has been rough and follow-up has been overwhelming. It’s becoming more and more normal everyday but the first week was really hard. For each meal I have to measure out her food, count how many carbs are in each food and then test her to see what her blood glucose level is by poking her finger. I then need to give her insulin to correct if she is too high and also for all of the carbs she’s going to consume, ideally 20 minutes before she eats (I don’t know if we’ve actually made it that long yet. She’s not good at staring at food and not eating it!). I then have to make sure Paisley gets fed and around the same time Fox wants to nurse and every once in awhile I get to eat too. By the time all of this is done for one meal, it’s on to the next meal. When poor Jon gets home I’m so happy to just hand all of it over to him and he’s been amazing to stay on top of everything as well! It’s getting better as we’re memorizing the carb counts in our regular meals and snacks and I’m anticipating becoming a carb encyclopedia by the end of this!
We will be saying goodbye to Swig, at least for now. I’ve had a hard time mourning over some of the things she’ll lose in all of this. Soda (and other straight sugar) are hard to dose for and control and I just can’t get on board with the sugar-free stuff (please do not be offended all of you diet coke addicts, I just can’t handle the fake sugar!!). Sick days will be rough. She will always have to deal with this for every bite of food she eats-including her wedding cake one day. Her births are going to be high-risk. Spontaneous anything can only be so spontaneous when you have to pack a cooler full of meds to go with it. It’s been hard thinking about the reality of this long-term.
Instagram and Facebook have once again been huge blessings in all of this. We have very quickly been able to keep our friends and family informed (thank you all for all of the love!) and also connect with other groups of people that have helped us and supported us. Reading stories of adults that have grown up with it and lead successful, normal lives have been so encouraging because there are some really scary things that can happen.
Now on to figuring out school, learning more about dosing and carb-counting and praying she doesn’t have a sick day for awhile!!
And to whoever dropped off this card-you are sneaky and we love you. Thank you ♥