I swear to God I don't know if I'd had a good day or not. Started out good, got crappy, got better. The new nurse, LOVE HER! Seriously, she's great. She wasn't intimidated by any of Colby's care. She has members of her family with special needs so she seemed really interested in Colby's equipment and how to take care of him. She picked him up and plopped him right down in that wheelchair, no problem. We had him out in the parking lot driving around and Colby showed her some stuff on his eye gaze, too. She's coming back Saturday (hopefully, we'll see how that goes, right?) Colby's other nurse was supposed to be here at 5:00 to watch him until bedtime. She had a family emergency and had to cancel. This isn't the nurse that I've been talking about having issues with, this is the other nurse we've had for years. I love her to pieces and feel badly for her. I'm praying for her family and hope things work out soon. But at the same time, I couldn't help but get upset that yet again another nurse has personal issues that untimately affect Colby's care. And at the current time, my overall well being is affected too, because I'm supposed to be taking it easy. I just about lost what little sanity I have left. I started thinking, what if I was really sick over here? What if I had really serious surgery? What if I was lying around in pain with tons of stitches? Where would we be, up Poop Creek without a paddle. This thyroid surgery isn't that big of a deal, thank goodness. Then I just made myself sick worrying about whether or not the nursing situation around here will get better. It's enough to drive you crazy. Crazier in my case. I have to have help around here, I'm a single mom for crap's sake. I need to work. Colby's care is very involved. I just flat out need help. Hate to admit it, but it's true, and I'm going to keep going through nurses and do whatever I have to do to get Colby the care he needs so we can get back to our "normal" lives.
Nursing issues are no big surprise for many SMA families. I've heard every story imaginable about bad nurses, stupid nurses, undependable nurses, difficult nurses, etc. It's just that at this particular time, I don't WANT a good nurse, I NEED a good nurse. Now I'm freaking out worrying about finding a nurse to go to school with Colby. What am I going to do about going back to work? I have to have a dependable babysitter. It's nervewracking. We have another new nurse coming tomorrow so we'll see how that goes. Keep your fingers crossed. I just have to have good, dependable nurses. It's hard enough leaving Colby sometimes, but I have to know whoever is here to watch him can focus on his care and not be caught up in personal stuff.
The day ended on a good note. I FINALLY got the wireless working around here. May not seem like a big deal to you, but I'm so glad to get that checked off my "to do" list. Colby's speech therapist had worked on it last week. Then I called the cable company and they reset something and it seems to be working now. Woo hoo! Now we can start doing some fun things on Colby's iPad and he can also get on the internet with his eye gaze. Also called the pulmonologist to get Colby's pulse/ox probe order faxed to a new medical company. Colby's bath aide came over. We got Colby cleaned up, unpacked his feeding supplies for the month. Dad brought the dryer back and I think it's in decent working order. Next on his "daughter do" list, find that pesky hubcap for the van.
Going to get some sleep and tackle whatever crapola the day brings tomorrow. Can't wait (sarcasm.) Nite all.
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