Today has been 4 weeks since Don went into the hospital.
What a month it has been.
I am exhausted, and weary at this point. I'm unsure of what we're facing in the future ...how much recovery he'll gain ...and what that means for us as a family.
He's lonely at the hospital, and I'm needing to be there with him for most of the day. He says I don't, but then when the idea of me leaving, or not come in until later in the day comes, you can see the anxiety build.
What we know at this point: he will be on oxygen from now on. They will not be weaning him off of it ...at all. It will be a 24 hour a day thing for life. He will be on a bipap from now on.
They are discussing the possibility of ordering a wheelchair. They will be ordering a walker. How long it will take him for him to be able to ambulate without the walker, we have no idea. We also don't know if he will. We're in limbo at this point. We don't know what our new version of normal will be, and we don't know how long it will be before we know what our new version of normal will be.
The nurses, PT's and OT's are so excited because he can do so much more than they'd ever expected him to do. They don't understand our discouragement, frustration and fear. They just don't seem to realize that he really was NOT sedentary ...and that getting used to the idea of having to live on oxygen, and having to get used to the possibility of needing walking assistance ...and wondering how long it will be before he can just decide to go out by himself and get a cup of coffee ... IF he'll ever be able to do that again.
On the mom front, when she fell and broke her finger, the day after Don was hospitalized (no, not the broken hand & ribs, that was a few weeks before this) she'd also injured her knee. She had an MRI and today we got the results. A piece of bone had broken off and is floating around the knee cap. The ortho doc gave her a shot in hopes to settle down the inflammation. Mom is not willing to have him operate to take the bone out right now. I can't say that I was cheering for her to opt for the surgery option at this point.
The reality is, she needs that knee replaced and he is probably going to try to talk her into just doing the whole thing when it's time. It's going to take quite the talking with as much trouble as she had with the first knee replacement.
Monday she went to the PCP to talk about her falling and her memory issues. I had to drop my kids off at church for church camp and was not able to be there. She knew this, and immediately called me and asked to have Samuel come over to help with some chores (um ...hello?).
I see the PCP tomorrow at my psychologists request ... because ...in her words ... I look awful ... lupus rash, low muscle tone in my face, sighing between sentences ... in other words: autoimmune mess. I will ask PCP about her impressions then.
I will also most likely get a prednisone dose pack for me.
We have no estimate of discharge yet, it's not on the table yet. So it will be at least next week, if not the following week, they are not in a hurry. He has a long way to go before he's ready to come home.