I've had a lot of people ask me recently what a typical day looks like for us. Well, just like in everyone's home each day is a bit different but here it is in a nutshell:
7:00am - Paul or I go in Parker's room and get report from the night nurse. She then leaves for the day. If he's sleeping well, I bring a little mattress in his room and try to take a nap. Sometimes I can, sometimes not. Paul gets ready and goes to work.
8:00-9:00am - Alexa wakes up. She's pretty easy in the morning. She gets to watch cartoons on PBS and eat her cereal. We pick out clothes and she'll get dressed and ready for the day. I have to figure out what to do with her crazy morning hair - it's a serious dilemma people!
9:00-9:45am - Parker gets his tube feeding which runs about 45 minutes. He gets two meds during this feeding.
9:45am - On Alexa's preschool days (Wednesday and Thursday), I wake Parker up and put him (still in his PJ's), Alexa, and all Parker's gear in the car and drive to preschool. It's only a couple of blocks away. I try to have her there by 10:00am but that doesn't always happen.
10:00am - On non-preschool days, I wake Parker up around 10:00am if he hasn't gotten up on his own. Waking Parker up after he's had a good night's sleep is one of my favorite things. He opens his sleepy little eyes, looks around to find me and gives me the cutest little "I'm-still-sleepy-but-I-love-you-so-much-it-makes-me-grin" smile. We cuddle for a few minutes in his rocking chair. I do his cares (clean his g-button site and trach stoma) and get him dressed for the day. Parker then gets his inhaler and CPT (mechanical percussion to help break up gunk in his lungs).
10:30am - Alexa, Parker and I usually read some stories or sing some songs. Then I encourage Alexa to do an activity by herself while I get Parker's nebulizer stuff ready.
11:00am - Parker gets an antibiotic breathing treatment that I have to give him in his room with the door shut because it creates smoke and could cause the smoke alarm to go off. It's also not good for Alexa to breath in.
11:15-11:45am - We usually take it pretty easy. I get Parker positioned into his tomato chair, bouncer, swing, or walker while Alexa is coloring, playing with toys, or making a mess of the living room. When Parker has Occupational Therapy through Lincoln Public Schools, they come around this time.
11:45am - Paul comes home for lunch 3-4 days per week. I'd like to say I'm a good wife and have lunch ready for him but that's not usually the case. He comes home and throws something together and I make lunch for Alexa. Her favorites are peanut butter and jelly, chicken nuggets, or Mac and Cheese. Yes, I only feed my family the most nutritious, well balanced and healthy meals for lunch.
1:00pm - Parker gets another 45 minute tube feeding. He gets one med during this feeding. Alexa goes down for a nap around this time. Sometimes I get lucky and both kids fall asleep at the same time. On those days, I try to squeeze in a short nap if Parker isn't needing a lot of suctioning. If not, I do chores, read blogs, and go crazy talking to the insurance company. I usually talk to a Doctor's office or two and read up on whatever symptoms Parker is having that day.
2:30pm - Alexa wakes up from her nap. I get her a snack and play a game or do an activity with her. We like to bake when we have a chance. When she's in preschool, I usually have an appointment to take Parker to. I try my best to schedule these on days when Alexa is in preschool because it's so much easier. We usually have at least two appointments a week and sometimes quite a few more.
4:00pm - Parker gets another CPT treatment which he loves. I think about doing laundry or dishes and then change my mind.
4:45pm - When Alexa is in preschool, Parker and I go pick her up. On other days, we begin thinking about what we can throw together for dinner and I wonder why in the world I didn't figure that out earlier.
5:00pm - Parker gets another 45 minute tube feeding. He gets 1-2 meds during this feeding depending on what day it is. I usually set him in his high chair or tomato chair in the kitchen so he can watch Alexa and I make dinner.
6:00pm - Paul gets home from work. Sometimes dinner is ready and sometimes not. Usually the house is a disaster area and I have done very little housework. Paul understands.
6:00-7:00pm Paul and I bribe Alexa to eat her dinner (because dinner usually consists of healthier and better balanced food than lunch and that means Alexa is not a fan). I talk with Paul about what crazy things the kids did today, how I have a love/hate relationship with the insurance company and how some provider messed up the billing again, what appointments were made today, and how much I would love to go on a vacation. He tells me about his day at work - which usually consists of the same thing every day. We laugh at how ornery Parker is because he keeps throwing his toys off of his high chair tray and looking at us as if to tell us "Would you get that please?" and then once we do he just throws it off again.
7:00-9:00pm - We play with the kids, try to watch some TV when we can, get some chores done, and get the kids in the bath.
9:00pm - Paul goes downstairs and works on his homework. Have I mentioned Paul has started his graduate program? I sit upstairs and sulk for a couple of minutes because I want to go back to school too. Then I come back to reality and get Parker's last tube feeding started for the day. He gets two meds at this feeding. We give him his inhaler.
10:00pm - We start getting Alexa ready for bed. We get PJ's on, brush teeth, and read two books. One book she gets to pick out and the other is a daily devotional designed for preschoolers. It was recommended to me and I think it's great.
10:30pm - We get Parker ready for bed. We do his evening cares (clean his g-button site, clean his trach stoma and change his trach ties), get his PJ's on, read him a book, attempt to brush his teeth - which is much easier said than done, and get him tucked in. Then we get all of his supplies cleaned, equipment (pulse oximeter, suction machine, humidity machine, oxygen concentrator, nebulizer, feeding pump) turned on or ready. Then we realize the night nurse is going to be here in five minutes and we have so much left to do. We update his daily board (when his cares were done, what meds were given today, what supplies we cleaned, how many BM's and wet diapers he had), make his tube feeding formula up for the night, and clean the kitchen.
11:00pm - We give report to the nurse and give Parker a kiss goodnight. The nurse will give Parker another nebulizer treatment, do another round of CPT, and start his overnight drip feeding. She'll also have to suction him a couple times an hour throughout the night. He usually needs suctioned less when he's sleeping than he does during the day.
11:30pm-1:00am - We take a breath. We watch a little late night comedy, Paul plays games on the kindle fire, I read blogs or catch up on Facebook, review what the next day has in order and then we crash!!!