Type 1, the complex, unpredictable, super-sensitive chronic illness, can challenge all types of people in all sorts of situations. We have faced discrimination. We have faced ignorance. We have thrown our hands up and surrendered. We have slaved to treat. And about 88% of the time we have confidence in what we're doing.
Just because we live this every minute of every hour of every day, does not mean we are not thrown surprises. Most people fail to recognize the complexity of type one and the millions of possible variables that can factor into affecting it. Its a lot like trying to memorize all the possible ingredients that contain gluten.
This year has been a tough year for my daughter for a multitude of reasons. In regards to T1 though, we have faced a lot of high blood sugars, ketones, and high A1Cs. We ended up back at the hospital last week. We even recognized the ED doctors and nurses, which is not a good sign.Now I know most of this could have been avoided if she had just taken her insulin (thank you Tandem for your reports features). But she is a teenager. She is dealing with a lot right now and I know its not easy.
However, last weekend was different. It started quickly and out of no where. Her friend had spent the night (2 nights in a row) and they were having so much fun. But she woke up that morning and was extremely nauseous. She decided to test her ketones, and she yelled to me from the bathroom. 1. They were large-which we've never seen. And 2. The color changed the fastest she had ever seen.
In our experiences to date, we were familiar with testing ketones. But they were always trace, small, or moderate and they would go back and forth between those. This time it was different though.
A few hours passed, we came home for lunch with no improvement and a higher BG. She did a site change and we corrected with an injection. Her BG kept rising though. She just wanted to sleep, and I woke her up every 30-40 minutes to drink more water.
Evening comes and she doesn't want to cancel our plans (a fun, family party). I agree to take her under the condition she tells me exactly how she's feeling there and we leave as soon as she gets worse (we packed a change of clothes for her just in case we ended up in the hospital). Not long after we got there she walked out of the bathroom, and visibly looked worse. I was not surprised when she said she felt worse. We checked her BG, even higher. We checked her blood ketones, 2.7. She could barely stand up - off to the hospital we go.
We got processed and taken back fairly quickly - DKA scares do that. Her initial blood work came back good though - no DKA. So they give her fluids and increased her basel rate and kept her for a little bit to make sure her BG goes down. 1:30am They come in and say we're being discharged her BG was coming down and she was in the 200's. Well, looking at her she looked better but she was still off. They couldn't pick up on that, but as her mother I could. I asked her to retest her blood ketones (we were running out of strips too) - 4.3. In the hours that we were there, she actually got worse and they were going to send us home with the same instructions to keep doing what we were doing and come back if she gets worse. Well, please describe worse to me. Ketones were large, how do I know if that gets worse? BG is still higher than range, what's the magic number for coming back? She's still nauseous, she still exhibiting other symptoms - tell me, what barometer do I use to bring her back?
Queue the act and art of assertion.
The nurse brings in the discharge paperwork and I say no. We're not leaving. Her blood ketones have gotten worse and I'm not comfortable taking her home right now. The nurse totally got it (she was awesome!). Doctor seemed annoyed when she heard my refusal, and ordered another set of labs.
Her bicarb and PH levels dropped.
The discharge of hyperglycemia and Ketosis just got another diagnosis added - Metabolic Acidosis.
At 4 am, they told us she would be admitted. All I could think was that we almost went home. In so many instances I would have just listened to the doctor, assuming they knew better than me. But in this instance, I trusted my gut. I followed my maternal intuition. She wasn't actually admitted as her 7am lab work showed improvements (we corrected everything with the IVs).
It was such a gracious reminder though, to listen to ourselves. To stand up for ourselves. To speak for ourselves and demand our voices are heard. We each are the experts of our bodies, and while doctors know a lot more about the anatomy generally speaking, we know what feels right and what doesn't.
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