It is 2am, Time for Antibiotics

I awakened to my alarm going off and Dad giving me a squeeze as if to say "your alarm is going off, you are going to get up, right?" I look at the clock and realize that it must have been going off about 3 times already and this is the first I am realizing it... No wonder Dad wanted me to be awake.

I stumble to the bathroom - better safe than sorry. And then grab my supplies to get Rebekah's antibiotics started. She stirs when I enter her room. I get her hooked up and she starts complaining that her mouth hurts... I get her some Benadryl - mostly for her throat but hoping that will help with her mouth, too. She takes the Benadryl in her mouth and then wants the syringe filled with water. (She has been drinking syringe after syringe after syringe of water - I guess we'll do just about anything to get her to drink and take in food (or drink) in her mouth.)

Then I go get more nutrition for her feeding pump, since it is just about empty. I add that to her bag. Then I change her diaper. (With feeds going all night long, she soaks her diaper at night and it needs changed at least once.) I throw away the trash from both getting the antibiotics started and adding to her nutrition. I check her temperature - 98.7 F (good!). I figure I'll lay down in the spare bed and try to get a few more z's before the antibiotics are done - I still have another 40 minutes.

Rebekah asks for a different blankie - she wants the "star" blankie instead of the "Dora" blankie, so I get up out of bed and switch them around. Then she wants her water and she says she wants it cold. I explain that if she drinks her cup, then I'll get her some cold water. Now she wants both the "star" blankie and the "Dora" blankie, so I get up again and fix that for her. This time, I leave the room, since clearly she won't let me get any rest if I'm in the room with her.

By now, she has about 30 minutes remaining, so I figure I'll work on an update. I may as well get something accomplished and I'm afraid if I fall asleep in another room, I won't be awakened by the alarm of the antibiotic pump. I grab my laptop, sit on the couch and start typing.

"Thud" comes from Rebekah's room. I go investigate to find her antibiotic pump on the floor - still "pumping" without the syringe... Her syringe is on her bed - intact. I pick up the pump, get the syringe installed and set up again and restarted and then set it back up on her dresser. All the while explaining to Rebekah that she can't pull on her tubes...

I look down at her diaper and she has untaped it and is complaining about the owie in the diaper. She is insistent that she needs a change and desetin. Her diaper is still dry, but I oblige her and cover her with Desetin (I hadn't figured she needed more, but I guess she thought she did) keeping the same diaper.

She complains more about the owies in her mouth, so I get her some pain meds. She wants to do it herself. I help her to get it into her mouth.

Back to the couch to type more, while I wait for her antibiotic to finish. I still hear her making noise every once in a while... She still hasn't fallen back to sleep.

Soon her antibiotic pump will be beeping. Then I'll need to disconnect the tubing, cap it, flush her line with saline and then heparin, get the next antibiotic syringe out of the fridge and connected to the tubing, and dispose of the syringes (antibiotic, saline and heparin) and the trash. Then, I can try to go back to sleep. Good Luck! The last few nights, I've layed awake thinking about Rebekah and all the things that need done around the house as well as Maggie and the other kiddos who are fighting cancer, too. Uugh!

Gotta go. The pump is beeping. Hope you all had a good night's rest.

Daddy's editorial addition: What mommy doesn't say is that this whole process repeats itself EVERY 6-8 hours, 24 hours a day.