The not so great news right now is that Peyton's home nursing hours are being cut from 84 hours a week to 70 hours a week effective July 3rd. 70 hours sounds like a lot...and it is. But she needs every one of those hours! She was allotted 84 hours a week back in February and it wasn't until this month that she actually really ever GOT all her hours consistently. Thank God we changed nursing agencies, but now her hours are being cut! I suspect it's a budgetary issue and not so much that she doesn't need the hours. She needs them. Even with her improving, she needs them. I've been sleeping in her room for 2 years. I have to be there through the night just in case she starts gagging and needs suctioned, or something else happens. The loss of 14 hours a week means 14 hours less hands on time with Peyton. It means less interaction with Peyton. It means less therapy time. Why? Because I am the one who will pick up what the nurses won't be doing and I have more than just Peyton to be concerned with. I will do the best I can, but it's going to be a big adjustment and it, no doubt, will impact what quality of life our family has right now.
On a positive note, I am really trying to listen to what the Lord is telling me through all of these trials. I wrote a guest blog on a friend's blog the other day about trusting God and finding strength. The link is:
Little did I know that only two days after I wrote that, I'd be needing to re-read my own words to draw some strength from to make some sense out of today's situation with the nursing hours. I followed up what I wrote there with a blog post on my own blog:
I don't think I have most of the answers most of the time, but I've had a lot of positive feedback from the posts, so please feel free to share my blog with others who may be in need of encouragement.
And back to a positive note...
We've been with the new nursing agency for a few weeks or so now. I have to say it is a decision I do not regret at all. The reduction in hours has nothing to do with them, and they are sympathetic to our situation but it's not up to them how many hours Peyton qualifies for. Since switching agencies, my stress level has diminished considerably, although I'm still fairly stressed.
Just to update you on me, lest anyone thinks I have no time to take care of myself (which is often true!), I went for a physical myself a couple weeks back. It had been a while since I had a general physical. "Female" stuff, I definitely keep on top of, especially considering my family history! But general stuff, I haven't managed to keep up with lately. I have a cyst on my left elbow. It's been there a LONG time - far longer than I'm willing to admit. I am seeing a general surgeon in a couple weeks to discuss having it removed. It's very small and only causes pain once in a while. It's right where you lean on things with your elbow, so it does get irritated every now and then. Very annoying. Not a big deal, and nothing to worry about - but it's got to go!! I've been having numbness in my arms/hands (continuously on the left side and once in a while on the right) for close to 2 months now. Talk about annoying!! I have to go for a nerve conduction study in a couple weeks. I'm sure it's probably just a pinched nerve in my back or neck and nothing more. Not worried - just annoying! I have high cholesterol and low vitamin D. Nothing I have to do anything about immediately.
So there you have it. All is fairly well at the moment! Thank you for the prayers! They are working!!