Its evening now and Levi and I are rocking by the fire, after a busy day of wrestling with his older siblings, emptying cupboards, swinging from the stair rails and chasing the dogs, my little boy is finally getting sleepy, he is only 2 but can keep up with the best of them. Snuggling into me he peaks up at me through his long lashes, his brilliant blue eyes still sparkling, little cheeks rosy, after one last sloppy kiss, he turns his face into my chest and is soon snoring gently. Sitting here, rocking him, I have a hard time reconciling this robust, healthy, and extremely mischievous little boy, with the little baby boy I was rocking a year and a half ago, in the same chair, by the same fire. That little boy was not sleeping peacefully, was not rosy cheeked. He was weak, his lips chapped, his face pallid, instead of gently snoring, his breathing was shallow and he was whimpering, his mewling cries no louder than a kitten's. He was slowly dying in my arms and I didn't even know it.
It was Friday, March 7th 2014, at 5 am, and despite a sleepless night rocking Levi, I was anxiously waiting for the doctor's office to open. He had been sick since January with RSV, a nasty respiratory infection, common in everyone though usually harder on infants. The doctors told me the cold-like symtoms could last up to 6 weeks, but as long as Levi was still growing and otherwise healthy, we shouldn't have to worry too much. However not too long after that I started noticing odd things about his eating habits, the number of wet diapers, the way he felt in my arms, compared to the way his older siblings had felt at that age. There were times when he would nurse and nurse and nurse, then cry for more, but then he would spit up, or rather "launch" it, and we would start all over again. I tried feeding him rice cereal, formula, other types of baby food, anything, but nothing seemed to satiate him or settle well. As February rolled around he started to get worse, in addition to the worsening eating habits, and increasing lethargy, my husband started noticing a strange smell on Levi's breath, he described it as metallic. Another day, my Dad commented to me that Levi didn't smell right to him, that Levi didn't smell like a normal baby.
At Levi's 6 month check up I brought a list of my concerns with me to the doctor. Again, they told me that he seemed fine, there were no red flags that they could see, his weight was good, 18 lbs, a little small maybe, but not enough to really matter at that point, he seemed to be making most of his goals for that age group, so not to worry. A week went by and his health seemed to deteriorate in a way that I hadn't seen. Then, the second week, he started vomiting. I brought him back in to the doctors and he had lost 2 lbs. They gave him some glucose water, had us wait to see if he would vomit, and when he didn't, they sent us home. That was Thursday March 6th. As soon as we got home he went to sleep but woke an hour later, and threw up what little water he had drank at the doctors. I called again and said I was going to keep pushing the sugar water like they suggested but was bringing him in first thing the next morning. That evening he stopped drinking altogether, and his cries were slowly getting quieter and quieter. I brought Levi in the next morning, and in 12 hours he had lost another 2 oz, and was weighing in at 15lbs 8oz, as if that weren't enough, the dry heaving had begun.
Shortly after our arrival, we were hustled up to the hospital, they finally agreed that something was definitely wrong. We were brought to a room on the general floor where they attempted to give him an IV but his veins were so disiccated that after four tries they called their best nurse up and did a scalp IV. I will never, ever forget how my baby looked on that table. He was so weak, just barely turning his head, dry retching to the side, his poor body convulsing with the intensity of it, blood from the IV trickling down his tiny head like a tear drop. We were shuffled from general care, to Intensive Care, and from Intensive Care, to Isolation by the nurse's station. The next two hours were a blur, tests were done, tubes were hooked and unhooked, wires tweaked and twisted, machines beeped incessantly. There was a tiny 15 minute window of quiet, my Mom who had arrived at some point had just put some food in my hands instructing me to eat, when the doctor came in and told me that Levi had Diabetes. At first I didn't understand "Diabetes?" You mean, you think he has Diabetes?" I asked. "No" the doctor told me "His blood sugar is over 800, LifeFlight will be taking you to Spokane, to the Children's Hospital, the helicopter will be here in 20 minutes...." at that point I heard a buzzing in my ears interspersed with words like "coma", "fluid transfer"...."Death" the word reverbrated through my mind, and I couldn't hear anything else.
A wave of people came in, prepping Levi for the flight, since I couldn't do anything except get in the way, I stepped out, tears flowing. There were two women in the lobby, an older one and a younger one, they hadn't been there earlier. They were dressed in plain homemade dresses, and had bonnets on their heads, I looked at them and they looked at me, I found myself begging them to pray for my son, to pray for my baby boy, he was only 7 months old. I heard the helicoptor land and rushed back in to Levi. They had him on the stretcher and were ready to go, telling me to leave everything, there wouldn't be room. My mom and my husband were left at the door to the hospital, and with a rumbling of engines and rotors we lifted into the air and were off. For the first time in two weeks, I started to relax, the thrum of the helicoptor, the quiet murmuring of the nurses attending Levi, the fact that finally, Thank God, we were moving, we were doing something, all served as balm to my spirit. We even flew over my parents farm, I could see the cows and horses grazing in the field, and my Dad on the porch, normalcy...and though it felt good to me, my Dad told me later that seeing that helicoptor and knowing that Levi and I were on it, made him feel as if someone had punched him in the gut.
After about an hour, the lights of Spokane rose up around us, and the landing pad, marked with a giant white " X" came into view. Levi was wheeled into the hospital, nurses on either side, me trailing right behind, and brought to the "PICU" unit, the place we would be calling home for the next 7 days. I remember them bringing Levi to his room, the on call doctor talking to me, asking me about Levi's history, asking if anyone in our family had Type 1 Diabetes, (no one does) and explaining to me about RSV and how even though my three year old most likely had RSV as well, it probably wouldn't affect him the same way it had effected Levi. Most clearly, I remember the yellow crash-cart being wheeled in, just in case, with a card stating that Levi had a high likelihood of coding. I don't remember what the doctor looked like, but I remember that crash cart.
Finally after more talking, more nurses, more tubes and wires, and more monitors, Levi was stabilized. The lights were dimmed and for the first time in what seemed ages, Levi was actually resting, his breathing though shallow, was even, and now instead of being gray, his little face was white, his lips fuller and not as chapped. Sometime later my brother who was living in Spokane at the time came. When I looked up he was standing in the doorway his silhouette outlined by the bright lights outside, he seemed so strong and steady that I practically jumped into his arms and collapsed against him. His presence, so much like my Dad's, made me feel like maybe, just maybe it was going to be okay. We sat side by side for a little while until one of the nurses came and got me, insisting that I sleep, they had a room for me and my husband, who was driving up. My brother assured me that he wouldn't leave Levi's side until my Mom and Greg arrived, without further a-do the nurse led me to our room. Once there, I kicked off my shoes, said a prayer, and let the tears and oblivion take me. In the night, I felt my husband come in and wrap his arms around me, the warmth and comfort we took from being together and the knowledge that our precious baby was being cared for by the best people in the state gave us strength. That strength I think carried over to Levi as well.
In the following days, Levi slowly began coming out of it. By Monday, his color was coming back, he even smiled at us. On Tuesday, he was sitting up and the nurses had to move the rails on the crib, what a triumph that was. Wednesday the doctor told us we could start thinking about going home. For the next day and a half, it felt like we were in college again. We had to learn so much about caring for Levi, how to mix his insulin, how different foods would effect him, warning signs, etc. it was exhausting. Finally Friday arrived and equipped with our JDRF backpack, books, medicines and our little "poke me here" bear, we were able to take our "new" baby boy home.
I don't know how we would have done it all if it hadn't been for our wonderful family. My husband's parents and my Mom took turns caring for our older children while we were in Spokane with Levi, making it possible for Greg and I to stay up there together. They were integral in the weeks following Levi's diagnosis which included another hospital stay, this time with pneumonia. In the year and a half since DX they have always been willing to step up to the plate and help out when necessary.
Diabetes has changed our lives but my older children and Levi never cease to amaze me. My 10 year old son carb counts, my 8 year old daughter knows how to check Levi's blood sugar and does it for me when my hands are full. My 5 year old son is incredibly protective of his baby brother, and is always telling people what they can and can't feed Levi, he even makes sure the juice I mix up for Levi is sugar free. Levi packs his pump around, takes his "pokes" as he calls them like a champ, and is just as rambunctious, funny and playful as any other 2 year old. As for me, I have a supportive family, beautiful children, and an amazing husband. In short, I have been blessed.
Kate…I’m so sorry for what Levi and you have gone through. I am also very happy that you have such a wonderful support team. When I first learned I was a type 1 diabetic, I must say my world seemed shattered. I had only been married two years and we had not yet started the family that I had always wanted. So I was literally miserable. I was 23, I thought my life would be cut short and filled with many side effects of diabetes that I had heard about, PLUS NO KIDS….WHAT??? Well, that was almost fifty years ago and here I am reading Levi’s story. Since way back then, my husband and I went on to have two children, a boy and a girl, plus two grandchildren, boy and girl! So at age 72, I predict Levi can live a long, happy life! Kate, my best to you and yours— especially Levi !!!