We just returned from our first family road trip which included our 4th Friends for Life, an amazing conference for families impacted by type 1 diabetes. We laughed, we cried, we ate way too many french fries (#friesfordays). We’re reflecting on our trip and can’t wait to share some of our thoughts with you very soon. In the meantime, here is a post I’ve been meaning to write since February but life got in the way…
It all started about eight months ago. We noticed that Isa’s skin looked a little bit red under the adhesive tape which holds her Dexcom continuous glucose monitor (CGM) sensor in place. We removed the sensor and saw that her skin was actually extremely red and irritated.
Out of nowhere, Isa had developed a severe skin allergy to the adhesive tape on her Dexcom, the medical device that had been attached to her body for the past two years. Dexcom has truly been a game changer for us and has — without a doubt — helped us to better manage Isa’s type 1 diabetes on a daily basis.
Not knowing what caused the irritation, we decided to try a different location. Same story…after a few days we noticed a little redness and removed the sensor to find her skin extremely irritated. At this point, her lower back now looked as if it had been burned by chemicals.
Within a couple days we noticed little red pimples all over Isa’s backside and thighs, which prompted another trip to the pediatrician. Those bumps turned out to be MRSA (a type of staph infection). Thankfully, we caught it early enough that it was successfully treated with antibiotics.
Her body was clearly rejecting the amazing device that had literally saved her life on countless occasions over the past two years.
Over the course of the next several months we tried changing up our normal Dexcom prep method. We went through a very frustrating process of trial and error to see if we could figure out how to stop the skin irritation — we eliminated some steps, changed the order of steps, tried different barrier wipes, different barrier tapes, none of the above, some of the above, all of the above….you get the point — but, unfortunately, NOTHING seemed to be working. We also took several breaks from Dexcom, primarily to give Isa’s skin time to heal (which seemed to take FOR-EV-ER!).
I felt so bad every time I had to change her Dexcom. Her skin was so extremely red and irritated and here we were sticking the sensor right back on to a different spot on her little body, which would most likely cause another bright red rash.
It was so frustrating, especially knowing that we were causing it. I kept wondering if we should stop trying to find a solution and just give her body a rest.
Were we being too selfish? After all, Isa didn’t really care if she wore her Dexcom or not…WE wanted her to wear it so WE could monitor her blood sugar 24/7 and not have to go back to setting multiple alarms for late night checks or rely solely on finger pricks every few hours. Although Isabella didn’t really complain much about the skin irritation, it was truly heartbreaking to see her bright red, burned skin each time we removed that Dexcom sensor.
We didn’t know it at the time, but the sensor that we put on Isa’s lower back at the beginning of February would be the one that caused our little girl to end up in the hospital for the third time since she was diagnosed with type 1 diabetes…
“Daddy, it itches,” she said.
I took a closer look and noticed a little bit of redness beneath the adhesive tape. I removed the Dexcom sensor and saw more redness and irritation, as I had seen countless times over the past few months. However, this time I also noticed a small, somewhat hard bump just under the insertion site. Over the course of the next few days that small bump began to grow.
Isa started complaining of pain in her lower back. I looked again and it was clearly infected. Not only was she in pain but she now had a fever and very high blood sugar levels, which just would not come down. Infections are not good for anyone, but for those living with type 1 diabetes infections can wreak havoc and be very dangerous — even deadly — if not treated quickly.
With Kristina out of town for work, I dropped Mia and Max off at my sister’s house and raced Isa to the ER. The large and growing lump on Isa’s back was an abscess, the result of a very bad infection caused by bacteria (I’ll spare you the pictures!), and would likely have to be surgically drained to avoid more serious complications. At around 11pm, after six hours in the ER, the nurse confirmed that Isa would be transported by ambulance to the Cleveland Clinic Main Campus where she would be admitted and operated on the next day.
While waiting for the ambulance, the Child Life Specialist (who was Isa’s new BFF) asked me if it would be alright if she gave Isa something for being so brave. “Of course,” I said. She came back with a brand new American Girl Doll named “Isabelle” and handed her to Isa. Isa’s eyes lit up and a smile came across her beautiful, but very tired, little face.
“I’m gonna call her Isa,” she said.
A couple hours later when both Isa and her new little friend were finally dozing off to sleep, the ambulance arrived. Since Isa would be transported by ambulance I was considering following behind the ambulance in my car so that Isa and I wouldn’t be stranded at the hospital with no easy way to get home….but I really didn’t want to leave my little girl in the ambulance by herself! I briefly explained my dilemma to my 5-year-old daughter and she said without hesitation, “drive your car behind us, Daddy…I’ll be ok.”
I was once again amazed and inspired by her incredible strength and bravery as I fought back the tears that were now welling up in my eyes. Late the next morning, my tears were back again as I held Isa’s tiny hand in the operating room and watched her peacefully doze off as the anesthesia worked its magic.
Thankfully — and although it seemed like it took forever — the surgery was quick and successful.
While I watched her sleep back in her hospital room, I kept thinking this was my fault. I put that Dexcom sensor on her little body, knowing that it was basically burning her skin. If only I had just waited longer or just not put the sensor back on to begin with. My little girl would have been home playing with her brother and sister at that moment, rather than recovering in a hospital room.
I stepped into the hallway to call Kristina and give her an update. I knew that it had been tearing her apart that she was away while her little girl was sitting in a hospital room. I assured her that Isa was doing fine and would be heading home soon.
As I was heading back into the room, I looked down the hallway and noticed Isa’s endocrinologist walking towards me. She had come to check on Isa and also asked how I was doing. I was still having some trouble keeping it together but managed to tell her that I felt so bad every time I saw her irritated skin over the past few months and even worse now that she was in the hospital.
“I’m so sorry she’s here and I understand how you must feel,” she said. “But, remember that Isa’s Dexcom helps you and Kristina take much better care of her.”
She was right. Dexcom and its powerful, real-time data enabled us to be much better caretakers for our daughter. While we may have had some selfish motivations (like just a little bit more sleep each night), we were really trying to find a solution for her. Isa may not fully realize or understand it yet, but as parents we do everything in our power to take the absolute best care of her and ensure she’s as healthy as she can be. Dexcom had become a very critical tool in our diabetes management toolkit; one that we can’t imagine living without.
Isa and I left the hospital later that day and headed back home. We decided to take several weeks off Dexcom as our little girl recovered from surgery and her skin healed once again. This also gave me some more time to research possible solutions; so I went into problem solving mode.
Thankfully, after some more trial and error, we’ve found a solution that works for us. And, believe it or not, it involves Flonase (yes, THAT Flonase).
Note: I’m not posting our specific solution as it may not work for everyone. If you’re interested in hearing about our prep process, please send me a message and I’ll share more.