I can not tell you how often I fantasize about being able to put Casey to bed and then just going to bed myself. Or being able to throw her into the car and head out to run errands with her in tow. It seems like such simple things that so many people take for granted. Don’t get me wrong; I am not complaining. I just get really frustrated having to depend on others ALL the time. I have always been very independent. It takes 2 people to get Casey to and from anywhere. One person has to sit with her in the back and manage her airway while the other drives. I usually drive and the nurse takes care of Casey. Between doctor appointments, therapies, etc. she has a pretty busy schedule. When nurses call out sick I have a few options. If there is time, I try to get in touch with my sister and have her come drive so I can manage Casey in the back. If there is not time, then I will typically cancel the appointment. Every now and then if it is an appointment that I really can’t cancel Tim may take us, then work in the car while I go in with Casey. We try to have a nurse scheduled during the day Monday-Friday to help with all of Casey’s stuff. While they are here I am able to get the house clean, run my own errands, etc as well. They are human though and they get sick, take vacation, have emergencies, etc.
Next we have our sleeping schedule. We have a nurse come in at night for 8-10 hours every night. Once the nurse is here then Tim and I can go to bed. However, if the nurse calls out I have to stay up with Casey all night. She is not a kid that I can lay down and sleep while on the night shift. Between positioning her, medications, suctioning, diapers, etc I have to be up and alert all night. When this happens on a weeknight it’s not too bad. I drag Tim out of bed around 6 then the day nurse comes in to relieve him so he can get to work between 6:30-8. I am able to get a little sleep. Anything Casey has scheduled out of the house however I will usually cancel or reschedule. When the nurse calls out on a weekend it is really hard. I am up all night, then Tim has to watch Casey all day so I can get some sleep. Everything that he put off all week while he was working doesn’t get done.
Early to mid- February one of our night nurses that worked Wednesday-Sunday told us that as of March she was not going to be able to work Saturdays anymore. No problem, she gave us plenty of time to find and train a new nurse. However, the agency dropped the ball. There was a lot of reorganization in the office and it just didn’t get done. So pretty much all of March I was covering Saturday nights (leaving Tim on days). The very last Weekend in March they finally sent out a nurse that seemed pretty good. I stayed up all that night training her. She told us and the agency in order for her to take Casey as her patient she needed more hours. She insisted on at least 3 nights. One of the first things she told me when she came in was how she likes to get a patient and stay for a long time. We had the nurse that took off Saturdays give up Thursday and Friday night as well to accommodate the new nurse. She was not happy about it, but understood we had to do what we had to do to get the shifts covered. The agency then put her with another patient on Monday and Tuesday nights as of last week. This past weekend I stayed up all night Thursday and Friday to continue training the new nurse. On Saturday she was doing really well so I went to bed and just got up every couple of hours to check on things. I felt like she was going to work out and that training had gone really well.
Out of no where today I get an email from the agency saying that she took another job and effective immediately will no longer be working with Casey. I am furious. We completely changed our schedule around to accommodate her. I wasted 4 nights training her that I now have to do all over again- whenever they find the next nurse. Not to mention the rest of March that I covered Saturdays. I am actually worse off now. Instead of just having a hole on Saturday nights now I have Thursday, Friday and Saturday nights without a nurse. The previous nurse took another patient. I am livid. We’ll see how long it takes to get a new nurse out this time.
On a good note, we did get Emily back. She took a job with the hospital a while back and had to leave. Her schedule finally worked out where she is able to come back and work Mondays (most, not all) with us again. Our other Monday nurse is really sweet and will still work with us some, but Emily’s hours work a little better with our schedule/needs. Casey was very excited to see her today.
Hopefully we will get a new night nurse in and trained quickly. Until then, if anyone sees me or Tim on the weekend and we look a little rough, try to cut us some slack 🙂 I will post tomorrow with pictures from Casey’s fun weekend. Just felt like venting for now.