Does anyone even pay attention to the titles? I spend literal HOURS trying to start each post with a good title, but i feel like it is rather ignored. Tonights means “And then…even though i was Diz-Osted and just wanted to go to bed, I realized i have slacked too many days on my self-imposed challenge and I need to just buckle down and put words to paper and be done with it.
And then I did.
This would be enough, really, to say I did it. Just for the sake of finishing it. But I can’t live with myself like that. So i’ll try to make it more….blog posty.
Last night was crazy and tough. Getting a critical lab value called in is never a good thing. If you have to have one, glucose is probably among the more “easy” things to deal with, but it was not easy to deal with by any means. whereas most kiddos who develop endocrine problems from long-term tpn have LOW blood sugar, Kendall’s has decided to start spiking high – sky high. Last night was not the first time she’s done it, but it has been a while since she’s done it. the most notable other time it happened was in between her two bad sepsis episodes this summer. I’m too tired to get into all the details about what it COULD mean, or what could be causing it. At the end of the day, her body gets in a bad cycle by some mechanism (illness? barometric pressure drops from sunday’s storm? oral food not being broken down appropriately? organ or autonomic dysfunction?) – and she cellularly dehydrates (fluid shifts into her tissues), and when it’s in her tissues and not her bloodstream, it can’t do a good job regulating things like electrolytes, insulin, glycogen, etc. That’s a way oversimplified version of what we think is going on, and like i said, it leaves a lot of details out. But none of what she’s doing is necessarily new or shocking – it’s just new that it’s happening seemingly with no cause. Now maybe she will start acting sick again in the next few days with a cold or something and then we’ll have our answer, but that’s a pretty dramatic response to a slow developing virus. Still – i’d take that because it’s the easy answer.
Anyways – she needed a lot of support last night, and even through this morning. Tonight she’s a little more settled out, but i’m still watching her like a hawk. Tomorrow she has an appointment with her pulmonologist and i’m hopeful that he will be able to help us continue coordinating her care so seamlessly between home and hospital. It will be good to see him – we always have loved seeing him to thank him for all he has done for Kendall. hopefully he is relatively close to on schedule so it doesn’t disrupt further the precarious logistical schedule i have set up to make sure everyone gets to their right place at the right time! k2 and k3 home from school, k1 and k2 to dance, nurse shift change, new nurse/me/k3/k4 to circus downtown, home to get big girls from dance. Crash. Lather rinse repeat.
Ok. now i’m thinking it’s good enough. Hopefully at some point tomorrow I will have enough time to write a real update. i’ve gotten a few good questions and had some good conversations with friends the past few days regarding this blogging exercise of mine, and it’s been thought (and blog post) provoking!
peace out party people.