12:00am Alarm goes off. Time to give KayTar Albuterol and Benadryl. It takes me a while to fall back asleep.
2:30am Alarm goes off, again. Time to tube feed KayTar 4oz of Pedialyte. She then decides she can't sleep unless she is ON ME. I doze a bit, but saying I slept might be a stretch.
4:00am Alarm goes off, a third time. Time for another dose of Albuterol and Benadryl. I roll her off of me and try to get a bit of actual sleep.
7:30am I wake up for the day, start the coffee.
7:45am KayTar wakes up. Test her glucose, 62. A little low for her, but not hypoglycemic low.
8:00am Give Benadryl, Qvar, Albuterol.
8:10am Test her urine. Moderate level of ketones.
8:15am Straighten my hair, pull on my clothes.
8:20am BubTar calls from school, saying Josh forgot to send him with a lunch. I call my mom and ask if maybe she can bring the poor kid something, since KayTar and I have to drive to the doctor and won't be back before his lunch. She says she'll get McDonald's and eat with him. Perfect!
8:30am Tube feed KayTar, 2oz Pediasure/2oz Pedialyte.
8:45am Make-up. Brush teeth. Dress KayTar. Pack up her meds. Gather things to entertain us at the pediatrician's office.
9:10am Leave for the doctor.
10:30am See the doctor. If she isn't better by Thursday, we'll start antibiotics. We get a referral to endocrinology for the ketotic hypoglycemia.
11:45am Get home. Test KayTar's urine, still moderate levels of ketones.
12:00pm More Benadryl, Albuterol.
12:30pm Tube feed, 3oz Pediasure/2oz Pedialyte. She eats 1 chicken nugget and a small amount of soda. Food and drink, by mouth! Hooray!
2:20pm Test her urine. Finally clear of ketones!
2:45pm Pick BubTar up from school. No conduct marks, no homework.
3:20pm KayTar has 4 oz of Pediasure...BY MOUTH!
4:00pm Benadryl, Albuterol. I'm feeling sick and/or tired and decide to skip class.
4:15pm BubTar's best friend is being mean to him over the phone. BubTar is very upset. I step in and tell his friend that my kids can't talk anymore today. This is becoming a pattern lately. We have a talk about standing up for ourselves...again.
4:30pm I have a major fall while sprinting into the next room to get to KayTar. She was coughing a ton and I thought she was going to vomit. I am seriously hurting and just lay on the floor for a while before figuring out if I can actually move.
4:45pm Josh calls from the store, asking what we want for dinner. He picks up a few necessary things plus dinner items.
5:30pm Josh is home!
6:00pm KayTar has 4 oz of Pediasure...BY MOUTH!
6:15pm Dinner. We have french dips, KayTar has a few spoons of powdered parmesean cheese. I force BubTar to answer THREE questions about his day. Getting the kid to talk about school is like pulling teeth. Isn't this supposed to start in the teen years?
6:30pm The boys go to the park with a new friend of BubTar's from the neighborhood while KayTar takes a play bath.
7:15pm The boys get home. Then it is pajama time, reading time, bedtime for BubTar. BubTar is too hyped up from the park fun to fall asleep on time.
8:00pm Benadryl, Qvar, Albuterol for KayTar. Try to get her to drink, but she is done for the day.
8:40pm Tube feed, 3oz Pediasure/2oz Pedialyte.
9:00pm Urine negative for ketones!
9:45pm Check her glucose, 91.
9:50pm LIGHTS OUT!