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!
don't you wish you could get a paycheck for all of this hardwork? lol.
Glad she seems to be feeling better. Now YOU get some rest!
Just reading this made me tired.
Phew! Your days are HARD!
talking about school is hard at any age. your day? Ouch.
What a day! And I agree with Sheree...after all of that you surely deserve payment in some way or another!
Post a Comment