Recently, I've had several different people ask me why we need nursing and what it is, exactly, that I do all day. This wasn't meant to be condescending or accusatory; these people truly didn't know. I realized then that my day-to-day may not be as obvious as I thought it was. I don't really blog about that kind of thing too much...honestly, because I can't expect people to understand.
So, I figured I would share what a typical day is around here. (Of course, this is on a day when we're not going to the doctor!)
The short reason for why we need nursing is that Abby needs 24 hour observation. Without nurses, I wouldn't be able to do anything but take care of Abby (as you'll be able to see below!) We wouldn't be able to sleep at night and I wouldn't be able to go to work....or have insurance.
I also realized that not many people know that I can't drive alone with Abby. A trained person needs to sit in the back seat next to Abby to make sure she doesn't need to be suctioned or that her vent doesn't come off. In an emergency, it would be terrible for me to try to pull over and get to her quickly. It's just not safe and you won't find a doctor who supports driving alone with a trached person. Therefore, a nurse always rides in the back seat when I drive with Abby. If it's during the evening and we go somewhere, Matt drives and I ride in the back. If no one else is home with us, I am homebound. This is why I can't take Abby to church with me (she's off the vent for 2 hours at a time now, so church could actually be doable, but I don't think it's right to expect a nurse to come with me and I can't drive Abby by myself). It's a little frustrating relying on someone else to drive (like I lost my license or something!), but we deal with it.
***Also, remember that 99% of my blogging is done late at night. As I type, I'm up waiting for the night nurse to come. I, by no means, blog every day. Time delay is my friend and I use it to the fullest! I almost always write multiple posts at once and set them to post at different time. I very, very rarely have time to blog during the day. If I do, it's a quick medical update that I wanted to share right away.
Okey dokey, here's the schedule:
6:40 a.m. My alarm goes off. I head downstairs to get report from the nurse.
7:00 a.m. The night nurse leaves. Whenever Abby wakes up (usually right around 7), I change her diaper, clothes, and suction her. Caleb comes down and I get his breakfast.
8:00 a.m The day nurse comes...assuming she is on time. I give report to her from the night shift and then get a shower and get Caleb dressed and ready for the day. Matt usually leaves around this time.
8:00-10:00 a.m. Abby is off of the vent and this is the time where I like to do lots of physical therapy. She's unattached to tubes and is able to move much easier. We don't have a "physical therapy time," but prefer to just have a PT lifestyle where we incorporate her therapy into everything we do. However, I do try to take advantage of Abby being tubeless!
8:45 a.m. feed Abby solid food
9:00 a.m. feeding and meds. Pour the milk into the feeding bag and prime it through the tubing so that she doesn't get air.
10:00 a.m. feeding done. Wash out the feeding bag.
10:00-12:00 p.m. Abby takes a nap. We are just recently really cracking down on getting her on a napping schedule because our pulminologist wants us to know when she'll be awake enough to be off the vent. This is much easier said than done with 6 different nurses taking care of her. I'm working on it! This is when I have some good time to spend with Caleb. I'm able to get his lunch and play with him a bit. Sometimes I run errands during this time too.
11:45 a.m. feed Abby solid food
1:00 p.m. feeding done. Wash out the feeding bag.
1:00-3:00 p.m. Caleb is taking a nap, so I'm able to play with Abby and get some things done around the house. This is my time to make my billions of phone calls without interruptions!!
2:45 a.m. feed Abby solid food
3:00 p.m. feeding
4:00 p.m. feeding done. Wash out the feeding bag. Nurse leaves.
5:00 p.m. dinner prep. I usually bring Abby into the kitchen with me on her portable vent.
5:30 p.m. dinner. We all sit at the table together. Abby is strong enough now to sit in her high chair. I usually try to give her something to eat while we're eating, but her teeth have been hurting her too much recently to take much of anything by mouth. We keep trying though!
6:00 p.m. feeding
7:00 p.m. feeding done. Wash out the feeding bag. Baths for both kids. If Matt is here, we divide and conquer. If not, I will either take both of them upstairs or just wipe both of them down. (It depends on how brave I am that day!) Either way, I wash Abby's hair daily to keep the helmet-head smell down.
8:00 p.m. Caleb's bedtime routine
8:15-9:00 p.m. Change Abby's trach ties, have some one-on-one time with her, and get her ready for bed.
8:45 p.m. feed Abby solid food
9:00 p.m. meds and set up overnight continuous feeds (We put in 90 mls every 2 hours for 8 hours, then 45 for the ninth hour) Hook Abby up to her monitors before she falls asleep.
9:30-11:00 p.m. housework and blogging time!
11:00 p.m. (or 12:00 a.m., depending on the day) night nurse comes.
Matt and I take turns going to bed early. Whoever goes to bed early gets up for the day nurse...in theory. But the person who stays up for the night nurse usually ends up getting up around the same time anyway! We can probably count the number of times we've gone to bed together since January 18th on one hand. :)
Abby also has physical therapy once a week and speech twice a month. Our respiratory therapist comes twice a month, the nursing supervisor comes once a month, and the case manager for Model Waiver comes once every three months. I place Abby's supply order once a month, call pulminary to give them a weaning update once a week, and seem to talk to the nursing agency on a daily basis!
Now, since we do usually have nursing during the day, I don't typically have to do everything in that schedule. I do still do all of the solid food feeding, and try to be as involved in therapy during the day as possible. However, I really appreciate when the nurses take the initiative with the therapy when I'm here so that I know it gets done even if I am gone during the day (like when I'm at work). I am able to take Caleb places during the day sometimes and try to give him some attention while I have a nurse here to help with Abby.
In the evenings or when a nurse calls out, it's all us. Matt is great when he is home, and we work really well together. It's when he's not around and I'm on my own that it gets tougher. That's when I declare a Movie Day for Caleb and feed him PBJ for lunch and dinner. :)
Please don't misunderstand this post. I didn't tell you guys all of this for your pity...we would do anything to have our girl home with us. It's really just in response to the questions we've been fielding recently. I figure that there are probably less-vocal people out there wondering, just what do you do all day? And now you know. :)