It has already been almost a week! It feels like we just came home yesterday. I think we have been going nonstop the entire week. Good new, it makes the time fly. Bad news, we are exhausted!
We spent Saturday evening and Sunday trying to get caught up on laundry, TV and just resting. Casey slept all day Sunday. She was so happy to finally be in her environment it was the first time she really relaxed in so long.
We had nursing start back at home on Monday. We had just started training a new nurse a few days before Casey went into the hospital. Since Casey was sick at the time, I ended up holding Casey most of the time (just trying to console her). We were not able to really tell if she had the skill set that we needed, but she was really sweet with Casey. She came back on Monday to start back up, and was supposed to be the day nurse moving forward for Monday and Tuesday.
On Monday we spent most of the day going over all the medicine and equipment changes with the new nurse. Casey slept most of the day and it was a pretty easy day. Then Tuesday I am not sure what happened. There were a few things that were not right (late medication, papers, etc). Nothing major, just a few small things. When I would ask about them the nurse was so defensive and had a million excuses (mostly blaming everyone else but her). It was tiring. I did not need excuses, I just wanted clarification (did Casey get this yet, where did you put that paper, etc). I was trying to get some housework done. While I was cleaning in another room (leaving the nurse to sit with Casey on the sofa) the nurse fell asleep. I came back in and saw this and was shocked. Casey was fine, but obviously not acceptable for a nurse – needless to say she is no longer with us.
We also starting night nursing this week on Wednesday, since Casey has to be watched on her machine at night. The night nurse will normally help Sun-Wed. She was not as familiar with a lot of our equipment and needs as we would like – I wish they could teach a Casey course in nursing school. I think we can train her and she should work out well. The best part, she stayed awake! It is just going to take a few shifts with her to get her up to speed. I hope that sometime next week I will feel comfortable enough to actually go to bed and really sleep while she is here. I have not slept (really slept) in about 4 years now. The idea sounds wonderful. It is going to be hard to get my body to allow it though.
BiPAP has been going okay. Casey has big poops at night that are a little tough with the mask, since she is not in a comfortable position, but she is getting used to her room and the mask. She is starting to fall asleep a little easier each night. We were supposed to go Monday for her follow-up xray. Now that I do not have a Monday nurse we had to reschedule the xray for Wednesday next week. Maybe the extra couple of days will be what she needs to have a great xray. I am so hopeful that her lung will be healed soon. I want her to have her sleep and play schedule back. Having to keep doing round the clock treatments and other stuff is so hard on all of us.
I think that is about it for updates right now. We are trying to catch up and get our holiday decorating and shopping done. I will post again next week, probably after we get the xray results!