This past week has been completely frustrating and it culminated with a trip to Philly's Children's Hospital ER yesterday. I appreciate all the comments on twitter and facebook. Some of you are still wondering what the heck happened. Well, here's the skinny.
Last week Grace started with a bad head cold. Her blood sugar became increasingly erratic. This isn't new to us. What was new were the persistent ketones that showed up to play. Ketones are a nasty acid that type one folks deal with when they don't have enough insulin in their system. When you are sick, you need more insulin but it's not like there's some formula you can use to determine exactly how much insulin. It's largely a guessing game with some solid guidance offered by CHOP.
I'm used to dealing with ketones and Grace. She seems to get them more often than other type one kids and it's just one of those things. I have the drill down pat. You don't mess with ketones. Untreated ketones can lead to bad bad things that I don't like to say out loud. When we test Grace's pee and we see ketones are present, essentially the world has to stop for a few hours. There's no running around (that exasperates the situation). Grace usually feels crummy anyways. We up her insulin and she has to drink fluids. Ketones make your stomach hurt, head hurt--like you've been hit by a truck on top of the virus you already have. Her drink of choice: diet Dr. Pepper. I've learned to buy this at Costco because you go through a lot with ketones. I never routinely offered either of my children soda before all of this. . .
Grace's cold ran into sinusitis. We got an antibiotic and had a good few days. And then the cough began. Back to the pediatrician who said bronchitis and a new antibiotic. He was concerned and wanted me to check in with him. Ketones were persistent and Grace felt awful. When I checked in the next day, Grace had been sent home from school, ketones gone crazy, and high sugar (450). He sent us off to CHOP.
Grace freaked when I told her we had to go in so we packed a bag with her favorite things: ipad, blanket, 2 stuffed friends. I was hoping it would be fast and it was, relatively speaking. Grace was a little dehydrated so they wanted her on some fluids but the nurse missed her vein in her hand. I'm reasonably sure I agreed to buy a laptop, ipad mini, and pony to get her through the experience of fishing for a vein that would work. Lab work came back fine and chest x-ray showed a nasty virus. There was nothing they could really do for us. Grace kept begging to see her endo doctor but he has patients on Thursdays. We asked our attending to try and leave a message and he was very kind and "swore" Dr. G would know we were there.
We were discharged a few hours later and our endo actually called us as we hit the road for home. I had him on the car phone and Grace was so excited to hear him. I watched her head nodding in the back seat as he spoke to her. He went over everything with us. He got back from his patients and her x-ray and labs were on his desk (how about that people-does CHOP rock or what?) He took a lot of time explaining everything, he listened when I ranted and raved about the damn ketone situation, and he was sincere in acknowledging how frustrating this all is. There was no pep talk as he has done in the past. He gave more of a "just hang on" kind of talk and said this is about as hard as it gets short of a hospitalization. We are still battling the ketones off and on today and Grace's cough is still awful. We're under strict instructions if Grace spikes a fever to come right back to CHOP. Odds are, she won't be able to stay hydrated, so crucial in managing ketones.
Grace went off to school today worried she had missed work and felt unprepared for her tests. Her teacher is very accommodating and I assured her no matter what happened, it would be ok. I don't want her to worry about any of this. I made myself smile all day yesterday in the ER. "It's no big deal" I kept telling her when, on the inside, I knew it was a big deal. The resident physician was very nonchalant and wanted to send us home. The attending felt quite different and explained all the tests he wanted. Grace kept looking at me. "It's no big deal," I told her. The doctor picked up on the vibe and kept echoing my sentiments with lots of eye contact with me. Holding it together is the hardest part. I had a few moments talking to her endo in the car when I had to take a few, giant deep breaths to keep it together. It's important to me that Grace sees that diabetes is managed with insulin, sugar, and strength. My "brave face" isn't just about getting me through. So many of you ask me, "how do you do it?" "How do you do this every day?" It's crucial Grace learns how to handle every obstacle diabetes will throw her way. Strength is a huge part of that formula.