Journal Entry December 28, 2013
So we found out yesterday that Grasshopper has type 1 diabetes. I have to keep this short since I need to get some sleep. I’ll fill in the “what happened” later but for now I have to keep going. We are tackling this as a family and we will manage this disease the best way we know how. We are at a great facility with a great team and we have each other. God, I put my trust in you. I need you. My family needs you. Please guide us. Amen.
While December 27, 2013 marks the day Grasshopper was diagnosed, of course his 21 month old body had already been battling itself for a while. It is difficult to know how long but looking back through pictures it seems as though it may have been a few months. Photos of him as a 19 month old at Halloween, the first one for which he was able to walk around in costume, show a gaunt little paperboy. His eyes were sunken and his cheeks were hollow. My husband is quite tall and thin and we just thought that Grasshopper had lost his baby fat and was beginning to resemble his daddy. There were odd signs here and there that trickled through my consciousness in those months. My son had always loved to go on walks in the stroller and I had developed a habit I was proud to establish. After breakfast I would pop him in the stroller and jog our neighborhood. Often the fresh air and movement would lull him to sleep and I could then take a shower while he napped. I was on top of this mom thing and I was going to ace it! I felt like I had everything under control. Ha! When he started walking on his own he insisted on walking beside the stroller. While I missed the time I had to jog, it was great to see him explore. Yet as he grew older he would get so tired and upset during our walks that he would sit down on the sidewalk and cry. He would shriek when I tried to put him in the stroller but if I set him back down he didn’t want to walk another step. He was always asking for yet another snack and would paw at the pantry door asking for crackers, pretzels, anything. I was at a loss and afraid that we were approaching the terrible twos about which everyone incessantly warns new parents. The smallest incidents would cause him to spiral out of control into a screaming fit as he lay on the floor. Somehow it didn’t fit what I had seen in other children of the same age. It became increasingly difficult to get him to nap. Often he would stare at me while I bounced him on our big yoga ball, the surefire way to get him to sleep. It felt like he was trying to tell me something well beyond his understanding. Even if he could talk he wouldn’t have the words for what was happening. I would ask him, “Is there something you want to talk about?” He would nod his sweet little head yes. “What is it, sweetheart?” He would give me a silent stare and then eventually a look of frustration. With a sigh he would put his head down on my shoulder. “I wish you could tell me, sweetie,” I would whisper in his ear and then continue my prayers asking God for guidance as I bounced and rocked my son to sleep.
Around the same time we noticed that he was wetting his crib almost every night. Not just a little wet, but so much urine that it soaked his pajama pants, shirt, sleep sack, sheets and mattress projector. We were changing bed sheets and clothing twice a night. We thought we had a diaper problem so we ordered ultra-super maximum absorbent nighttime diapers. He always went to bed with a sippy bottle of water and sometimes would wake in the middle of the night, holding it up and begging for a refill. We wondered if we should cut back on the amount of water we left with him at night. Now of course, we know that his constant thirst was brought about by his body trying to dump excess sugar and ketones into his urine. So many little clues now, in hindsight, add up. His urine smelled sweet. I started calling him Sweet Pea. I idly recalled random history facts. In centuries past, doctors would actually taste a patient’s urine and a sweet taste meant a diabetes diagnosis. While the urine output and the constant thirst raged on, we kept chalking it up to his growth. Yet even that began to bother me. He gained height but had not put on weight since his last few checkups. The final marker was that I began to smell an odd odor on his breath. I didn’t know how to describe it and I seemed to be the only one who could smell it. While we had family visiting for Thanksgiving I asked my husband and then my mother to smell what I could only call a plastic odor. Neither could smell it. Sometimes I couldn’t smell it. It was a strange random odor and I explained it away thinking it was from something he ate, or from the pacifier he still used at nap and bedtime.
Christmas preparations were upon us. I remember staying up late with the Mister, wrapping presents, watching movies and settling Grasshopper down again after he woke up for what seemed like the 20th time. He was still teething. There seemed to be an explanation for everything. Christmas day came and we had a wonderful time. Halfway through opening presents Grasshopper looked exhausted and refused to open up any more gifts. He was interested in sitting down and playing with the toys that were already filling up the dining room floor. In the excitement of Christmas preparations I had continually brushed aside my disturbing thoughts. Now that the excitement of Christmas day was behind us my mind turned to the suspicions that had been nagging me for months. I did what many other 21st century parents do. I Googled it. Excessive thirst, frequent urination, fatigue, constant hunger, odd odor on the breath. A lot of frightening things popped up in my searching, but the recurring topic was diabetes. Most sources described the odor as fruity or sweet. That didn’t fit what I smelled but some sources described the odor as smelling like fingernail polish. Like acetone. That smell is a symptom that the body may be headed into diabetic ketoacidosis, a life threatening complication. I finally had a description that matched what my nose knew.
So on December 26, 2013, the day after Christmas, I called our pediatrician’s office and explained my concerns. I got an appointment for the next day. The Mister was upset with me for actually using the word diabetes in my initial call to the doctor. Ever the logical one, he wanted to be more cautious and just list the symptoms we had observed. He didn’t want to bias their exam with any preconceived notions. In any case, the next morning on December 27 Grasshopper, my mother-in-law and I found ourselves sitting in the pediatrician’s exam room. A kind, compassionate nurse whom I love to see there listened to my concerns and produced a blood glucose meter. He performed that task which is now so familiar to me I can do it in my sleep. Insert test strip. Wipe finger with alcohol pad. Lance finger. Apply blood to test strip. Wait for the beep. After glancing at the result on the screen, he ran to get another test trip, just to double check, he said. Rinse and repeat. After the second test he showed it to me. The meter simply said HIGH. I felt the blood drain out of my face. I knew what that meant. My sweet precious 1.5 year old son had diabetes. I knew enough to know there was much more to know. Hoping against hope I asked the nurse what EXACTLY that meant. He said that Grasshopper’s blood sugar was so high that the meter they had in the office couldn’t assign it a number. I asked how high the meter went. The nurse had to call the manufacturer and came back with the answer. 600. His blood sugar was over 600. Our pediatrician’s office quickly made arrangements for us to be admitted at Children’s Hospital of Birmingham in the diabetes ward. We were advised that we could pack a few things, that we might need to stay for a few days and that we needed to get up to Birmingham as soon as we possibly could. My mother-in-law and I drove home in shock. She was wonderfully calm and helped me to stay calm. We broke the news to my mom, my husband and my father-in-law who were still visiting. The Mister and I quickly packed up and drove to Children’s.
The next four days were a blur of awful tests and sleeplessness during which we had to hold Grasshopper down, restraining him with our bodies while attempting rudimentary comfort holds so the nurses could draw blood, insert IVs, and apply urine collection devices. The blood glucose meter they had registered his level in the high 500’s. His A1C was around 12.
I will be eternally grateful for the education we received during our four days in the hospital and especially grateful that we were so close to a world class facility. Diabetes is a difficult thing to tackle when I am rested and alert. It was mind numbing in those early days when I was sleep deprived and stressed about the sudden shift our life had taken and the news that our tiny son’s life, while manageable, would never be the same. The doctors and nurses we encountered were so patient with us, explaining the procedures and answering our questions, often multiple times. As we watched helicopters land on top of the hospital buildings we prayed for those children and their families and we were grateful that Grasshopper had been diagnosed before he went into DKA or worse. The education we received while in the hospital has continued to surprise me. Other families and adult type 1 diabetics have described their initial diabetes classes and I truly feel that we received a solid, thorough education that has stood us in good stead as we manage Grasshopper’s diabetes. I hope that though this blog I can help others in the T1D community to find answers they need to make their lives a little easier. I certainly encourage those reading to follow their endocrinologist’s directions as I am not a doctor and cannot give medical advice. T1D can be such an isolating disease. My hope is to lessen that burden by letting you know you are not alone in your struggles as an individual and as a family.