First, I'm so glad to have found this place. I've been on the hunt for a few days trying to find some support. I don't know anyone with T1D other than acquaintances or sister/brother/BFF of friends who have the diagnosis. Our diagnosis came as a major surprise. I'll admit, I'm still very angry over how it came about. I suppose it started before Christmas when I developed a fever, chills, exhaustion....seemingly, the flu. I was down Christmas Eve all day and much of Christmas Day. My husband and Athena, my 2.5 year old, developed fevers on Christmas Day. My 5.5 year old daughter, Gia, followed suit the day after Christmas. We all battled what we believed to be the flu although I didn't even consider seeing a physician unless there were complications. My 2.5 year old still nurses and my daughters and I have a pretty clean diet (local food, organic, whole foods, etc.). Athena's fever lasted 5 days. She complained of a headache and she started grinding her teeth during that time. On Saturday, she started complaining of her ear hurting. I put breast milk in it thinking it was a side effect of "the flu." Sunday morning her fever had broken but she developed this deep, heavy, rapid breathing. She was tired and wanted to rest a lot (completely unlike my daughter, even when ill). She was drinking plenty of fluids and peeing almost normally although she did mention it hurt to pee. I considered UTI. Our first visit to the ER happened Sunday night. Long story short, we were sent home with an ear infection diagnosis and prescription for Omnicef to cover "possible pneumonia" and "possible UTI." They DID ask for a clean catch, which she provided, and when we left triage, that cup of urine sat on the sink. I assumed it would be "sent away for labs" or some such medical jargon. Monday was more of the same. Lethargy developed, the Kussmaul breathing (which I did not know was Kussmaul breathing), the drinking a lot and peeing a lot and grinding of the teeth continued. She had been wetting the bed every night despite my best efforts. For a kid who was fully potty trained by 14-15 months, this was shocking. I considered another ER trip, but my husband assured me she was just ill and would be well soon. She'd only had two doses of the abx, give it time. Tuesday, New Years Day, was more of the same. By evening, I had myself convinced it was sepsis or some other awful diagnosis and called the On-Call nurse with our pediatrician's office. That nurse suggested we head back to the ER so I gathered up my baby yet again and took her out into the cold, dark, rainy night back to the Children's Hospital ER. I saw two doctors during this trip. The first told me she was "certain it was just a very bad, cold..." I asked about the breathing and she told me my baby's body was "working very hard." I asked about UTI results, she told me there were no labs drawn. I asked if they would look at her chest, she didn't want to lift her shirt and disturb her, but she listened to her breathing and both ER trips, she was put on pulse ox with a beautiful 98-100 reading for the duration. We were sent home to "give the Omnicef a few more days." Wednesday was more sleeping, more lethargy, more drinking, no eating, no poop (hadn't pooped since December 26th/27th and hadn't eaten enough calories in days at this point), more grinding teeth, more complaints of headache, she stopped talking much, she stopped walking, she fell over when she tried to walk. I made a "sick visit" appointment with her pediatrician for Thursday after I got off work in the early afternoon. Here is when I start crying. Athena wasn't rousing much at all that day. It was difficult to get her to stay awake for any length of time. She couldn't latch to nurse, she definitely wouldn't eat, she would request water and she would pee when I put her on the potty (supporting her entire frail body). They weighed her. 27.2 pounds. My daughter was 34 pounds over the summer. The pediatrician asked for a clean catch and we got it. They flu swabbed her. Glucose 2,000+ and large ketones and flu positive for Influenza A. The doctor said "possible diabetes" and I nearly collapsed. People lose their legs from this! I thought. I didn't know much just a week ago. They finger pricked her. 555. There was a lot of shuffling and rushing suddenly. I could hear my pediatrician's very stern voice on the phone with a doctor at CHKD (Children's Hospital we'd visited twice that week). She came in and told us to get over there, we'd be admitted promptly. My daughter was very ill. The waiting room was packed but they brought Athena right back. She was lifeless in my arms. She went from "having a really bad cold" to having about 15 doctors and nursing in her triage room listening, poking, prodding....Athena roused a little, enough to ask for water and cry and ask to pee. When I say "ask" I mean grunt and I knew what she needed. My daughter was chatty, she talked early and at 2.5 she knew words my 5.5 year old has yet to master. Finally, a diagnosis. "She has Type 1 diabetes and she is in what is called diabetic ketoacidosis and she is very, very sick" they said. I cannot quantify my rage at this point. I couldn't see anything. Everything blurred, the tears were streaming down my face, the coughing sobs I tried so hard to choke back were forcing their way from my chest. I learned later that her metabolic screen showed a bicarbonate of less than 5, an almost non-existent potassium level and her blood was like maple syrup. She got various glucose readings in the ER all around 600. She was slipping into diabetic coma or had been combating it for hours at this point. She was mostly unconscious throughout the rest of Thursday, through the night in the PICU and into the morning. Her labs corrected overnight which surprised the doctors and nurses and because the hospital was at capacity, they sent us to the floor Friday afternoon. Glucose checks with heel sticks (major mistake on the PICU's part) left bruising and cuts on her fingers. Her veins were no good and she was bruised from multiple attempts at lines. Insulin pump, IV fluids that rotated out glucose (to prevent edema), potassium (because her levels were so low) and what not were on tap. Her glucose plummeted faster than they liked and she dipped below 80 a few times. I still wonder the lasting effects from that. Despite a low of 44 and maintaining pretty obnoxious highs of 250-350 the entire time we were in the hospital (two whole days), they discharged us Saturday morning. I had been given a stack of information, trained on how the administer the insulin, the when/where/hows of everything. We were trained on her diet and how things don't really have to change, except that everything is changed. We've been home for 4 days now. It's like bringing home a newborn, isn't it? Except when Athena was a newborn, she slept with me and I nursed her and I never had to really wake up in the middle of the night. Now my iPhone blares at 1am and 5am to check blood glucose. And again throughout the day "check glucose" or "prepare lunch" or "Athena dinner prep" so we can stay on a schedule. Her glucose is nowhere near leveling out. I've gotten readings of well over 400 but thankfully nothing below 120 yet. I'm thankful for that. The lows scare the pants off of me. So here we are. Our "new normal" and I'll admit, I love a good challenge but I'm feeling overwhelmed, disorganized, sometimes hopeless, out of control and depressed about it all. I know it's not a death sentence, but when my 2.5 year old begs "not yet, mama, no "meddies" yet, two more minutes, please mama, it's ouchie" well....you get a little discouraged. I know we'll 'get there' and she'll 'get used to it' but right now our words have been turned upside down and it's all a little overwhelming. If you'd made it through this, bless you. I realize it's a very long introduction! I'm wordy. I needed to get it out. I'm so angry. Not necessarily at her diagnosis, I'm thankful to have a reason for all this. I'm thankful my baby is smiling and walking and talking and laughing and eating and playing again already. I'm happy to see her face filling out already. I'm happy she's nursing again. But I'm angry at the ER for missing this TWICE. I'm angry to know that if I'd listened to those godforsaken ER doctors at my Tuesday visit and just 'given it a few more days', my baby may not be here right now. She had Kussmaul breathing for five full days and I haven't found much in my medical research that suggests there are many cases of small children who are able to withstand such a severe case of ketoacidosis and live to tell the story. I'm filed complaints with the hospital, I'm writing a letter to the hospital Administrator, I'm filing a complaint with my city/state and I've considered talking to a medical malpractice lawyer. This can never happen to another child. Oh, and my name is Jenna. I'm happy, so so happy, to have found this place.